Attn. NDIS Joint Standing Committee- General Issues Inquiry
March 7th, 2024
1. PURPOSE
This paper has been prepared for the NDIS Joint Standing Committee by the NDIS mental health occupational therapy community of practice, and responds to the NDIS Review Final report with a focus on psychosocial disability. This paper is intended to inform policy makers and decision-makers regarding potential risks, gaps and solutions pertaining to the NDIS Review Final Report, for people living with psychosocial disability.
Occupational Therapy Australia, the professional association and peak representative body for occupational therapists in Australia, supports this submission.
2. INTRODUCTION
The NDIS Review Final report is a landmark report sign-posting the road ahead for the NDIS and the broader disability ecosystem. We welcome the report and acknowledge the effort that has led to it. In particular, we commend the recommendations to build an Australia-wide ecosystem for psychosocial disability, including the commitment to building foundational supports. We welcome a strong focus on the reduction and elimination of restrictive practice for all groups, including psychosocial disability. We welcome the introduction of the International Classification of Functioning (ICF) as a best practice, internationally recognised, framework with high compatibility with the NDIS.
While the Review report brings some recommendations that have potential to improve both NDIS outcomes for participants alongside Scheme sustainability, we highlight that Recommendation 7, without careful and deliberate design aligned to disability insurance principles, is at high risk of manifesting and exacerbating existing issues, for both people living with psychosocial disability, and for Scheme sustainability. We are also concerned that the expected cost savings, and participant outcomes, anticipated in the proposed new operating model for psychosocial disability through Actions 7.1 and 7.2, will not in fact eventuate as anticipated.
We appreciate the reinvigorated NDIS must reduce the rate of cost growth (targeting 8% p.a) and understand the importance of the outcomes of this Review to save money, improve outcomes for people with psychosocial disability and ensure Scheme sustainability over the long term. We are contributing this paper to help ensure the recommendations from this Review have the best chance to deliver on these aims. This response paper focuses on NDIS Review Supporting Analysis Chapter 2, Part 6, p.507- 536. Specifically, Recommendation 7, Actions 7.1 and 7.2 (p.508).
Recommendation 7: Introduce a new approach to NDIS supports for psychosocial disability, focused on personal recovery, and develop mental health reforms to better support people with severe mental illness
![Legislative change required]
• Action 7.1: The National Disability Insurance Agency should introduce a new approach to psychosocial disability in the NDIS based on personal recovery and optimising independence. • Action 7.2: The National Disability Insurance Agency should establish an early intervention pathway for the majority of new participants with psychosocial disability under section 25 of the National Disability Insurance Scheme Act 2013.
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3. PSYCHOSOCIAL DISABILITY
We highlight the need for the NDIS Review implementation to recognise the profound impact psychosocial disability has on daily lives. The profound impact persists between acute episodes and is not adequately addressed by systems outside the NDIS. We call for ongoing commitment to choice and control and the right to an ‘ordinary’ life for this group.
Further, potential risks due to the development of the ecosystem and introduction of the NDIS early intervention pathway, must be explored to mitigate the risk of creating further barriers to accessing disability support. These risks include: The step-up step down approach creating a revolving door for the NDIS; the limited and prescribed nature of early intervention supports and the proposed frequency of assessment creating barriers to effective support; and the potential complexity and gate-keeping a multi-tiered system with multiple funding streams across Federal and State funding systems, will bring.
4. Response to Action 7.1: The NDIA should introduce a new approach to psychosocial disability based on personal recovery and optimising independence.
The risks and benefits of introducing this new approach, which departs from existing NDIS concepts and constructs, require further examination, particularly from the perspectives of conceptual clarity, expanding Scheme scope, and the creation of new, separate constructs and pathways for the psychosocial disability cohort. We highlight that the National Mental Health Consumer and Carer Forum has published a position statement focused on the NDIS Review, highlighting that the Review report has misunderstood the concept of personal recovery [13], and we concur with this position.
4.1. CONCEPTUAL CLARITY & SCHEME SCOPE
The core construct utilised within the NDIS Act is functional capacity, and eligibility for the NDIS is determined by evidence demonstrating substantially reduced functional capacity. The focus on functional capacity as core construct is a key point of difference that demonstrates the role of the NDIS, beyond other service systems. The Review report introduces the construct of ‘personal recovery’ and ‘independence’ and recommends a legislation change to formally incorporate these concepts to the NDIS (Action 7.1).
The issues with this direction, are evidenced throughout Chapter 2, Section 6, where there is blurring, overlap and inappropriate interchange of each of these constructs, and also between recovery from symptoms, and the recovery of function. Each of these constructs are discrete, with specific theories of change, intervention targets, and role in the lives of people with disability. ‘Personal recovery’, the highly personal and internal recovery of hope and self-identity, is an entirely separate construct to both clinical, and functional, recovery, and these appear conflated in the Review report, which goes so far as to suggest a personal recovery approach can remediate impairment or reduce disability [1].
An understanding of personal recovery as a basic principle, holds significant value in the same way that underpinning principles such as a trauma-informed approach, or culturally safe practice, hold value within the NDIS. The psychosocial recovery-oriented framework may retain value as an accommodation within the NDIS, as per the original design of this framework. Beyond these, formalising the introduction of a personal recovery approach risks expanding Scheme scope at a time when greater focus is required to achieve outcomes for people with the most significant disability; and further entrenching conceptual confusion.
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Conceptual clarity is paramount, and it is recommended the NDIS maintain construct integrity with the focus on functional capacity, and construct validity in the design of both functional and support needs assessment processes, and intervention. The focus on functional capacity is compatible with the broader introduction of the ICF to the NDIS, and psychosocial disability policy should progress in alignment, for example, by drawing upon the international best practice such as the World Health Organisation core sets to frame functional impairment and address restriction in participation [2].
4.2. EQUITY ACROSS DISABILITY GROUPS
The proposed introduction of a ‘personal recovery and independence’ approach, alongside a recommended early intervention pathway, initiates a new psychosocial-disability specific construct and pathway. This raises potential questions around fair and equal access to support for all groups, and, is this segregation by policy targeting a particular group of disabled people? While the Review broadly recommends moving away from a diagnostic to a functional capacity focus for people with disabilities, the psychosocial disability cohort are not afforded that right. They are in fact defined by and segregated according to the diagnostic origins of the disability. The early intervention pathway proposed within the Review report for the majority of this group, including detailed and prescribed intervention plans, clearly singles out this adult group only.
5. Response to Action 7.2: The NDIA should establish an early intervention pathway for the majority of new participants under Section 25 of the NDIS Act 2013
We recognise an early intervention approach may be effective for some people with psychosocial disability if the service delivery model is well designed and includes models that encompass evidence-based capacity building by trained mental health professionals. A robust Theory of Change would need to be developed and the pathway piloted, prior to changing the legislation. Streamlined access to the NDIS under Section 24 of the NDIS must be upheld, for those who meet the criteria for inclusion. We express concern that the proposed pathway as it is described in the Review departs from disability insurance principles, and the evidence base and case for the select early interventions proposed is not sound and will not deliver on the outcomes expected from it.
5.1. PROPOSED EARLY INTERVENTION PATHWAY & DISABILITY INSURANCE PRINCIPLES
Currently, the NDIS lacks tailored assessment processes to determine when remedial approaches (capacity building) are required, and when accommodations (compensatory/core) approaches are required. It has largely lacked the capacity to fund and implement interventions in tune with these principles. This has resulted in the much-highlighted over-reliance on core support, essentially an accommodation, when allocating resources to the psychosocial disability cohort. This has had significant and ongoing cost-implications, in both the short and longer term. Concerningly, this issue has not been addressed through the NDIS Review, despite being fundamental to the success of an early (in-scheme) intervention pathway which aims to ‘front-load’ capacity building to reduce future need for compensatory strategies. In fact, the proposed early intervention pathway under Section 25 of the NDIS Act, for psychosocial disability, appears to depart from these disability insurance principles.
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5.1 PROPOSED EARLY INTERVENTION PATHWAY & DISABILITY INSURANCE PRINCIPLES (cont)
This glaring gap is highlighted in Case Study 17 provided in the NDIS Review, ‘Brett’, (p. 508, NDIS Review Supporting Analysis) Brett is allocated to the early intervention pathway, apparently without consideration or assessment by a professional of his functioning. The navigator offers him a limited range of options devoid of Theory of Change, apparently not tailored to need, capacity or consideration of remediation or potential accommodation factors, or goals. When these interventions are proven to be ineffective - 2 years later -the navigator supports him to access the NDIS under Section 24 of the Act.
An early intervention pathway that does not focus on disability insurance principles to allocate resources, funding and support, risks perpetuating and worsening the already problematic issue of inappropriate supports being delivered to people with psychosocial disability. The trend of poor outcomes and high cost, at both human and fiscal levels will only continue to worsen under the proposed early intervention model described in the Review.
We recommend the re-establishment of disability insurance principles to determine remediation and accommodation requirements in both NDIS early intervention (Section 25) and the NDIS (Section 24), as an urgent priority, before progressing policy and model design and legislation change. This nuance is critical to achieving both improved participant outcomes and cost savings. The workforce would then need to be structured to meet these Scheme requirements, so that these principals can be implemented with competence through targeted, personalised approaches.
The recent Australia National Audit Office audit-report to the Australian Auditor General Effectiveness of the NDIA’s management of assistance with daily life supports (June 2023) [3], indicates the completion of a (non-WHODAS) functional capacity and assessment, generally completed by mental health occupational therapists, led to a core-support budget reduction of an average of $8000 per psychosocial participant during 2021-2022. If we assumed each of the 63,000 participants with psychosocial disability undertook a plan review that year utilising this assessment approach, this would create a core-support cost-reduction of $540,000,000, based on this assessment approach alone, for the year – possibly significantly more, if personalised capacity building intervention were implemented based on tailored assessment recommendations. The existing NDIS policy and system of allocating core budgets based on Typical Support Packages, and the absence of a comprehensive assessment of support needs for people who do not access occupational therapy, have been primary drivers of over-reliance on high core-budget allocation and compensatory funding for people with psychosocial disability.
This NDIS Review provides the opportunity to rebalance the provision of individualised supports and save money through an increased focus on remediation (capacity building funding) and a consequent reduction in the accommodative/compensation approach (core support funding ). This rebalancing will save costs overall, improve outcomes for the participant, reduce workforce risk for the Scheme, and increase the likelihood of an early intervention pathway delivering on its aims.
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5.2. A CONTEMPORARY EVIDENCE-BASE FOR EARLY INTERVENTION?
The Review report recommends a timeframe of 3 years for the early intervention pathway, with assessments to occur frequently. Following this, the Review report indicates that some people will no longer need the NDIS can be exited back to foundational supports, as part of a step-up, step-down approach. There is no rationale or justification provided in the Review report for the specific 3-year timeframe or the frequency of assessment.
Such a significant policy recommendation requires broad and deep justification, including evidence of effectiveness for this group. We have significant concerns from our decades of experience working with this cohort experiencing substantial psychosocial disability, that there is a high likelihood that the limited range of early intervention supports proposed in the NDIS Review report, will not lead to substantial functional outcomes for the cohort, and may result in delays to accessing effective support and intervention. We recommend early intervention supports are tailored to individual need.
Tailored functional and support needs assessment built on the ICF core sets could assist with identification of the vast and unrecognised range of factors that persist between acute episodes and lead to poor social and economic participation outcomes for people living with psychosocial disability. Use of evidence-based assessments, identifying impairment-related participation restrictions, would result in identification of supports that could then be structured in accordance to actual need.
There are very significant and under-recognised complexities experienced by those who live with substantial psychosocial disability, that contribute to reduced lifespan of 20 years compared to the average Australian [4]. For example, current research highlights the high rates of persistent disability experienced by the cohort identifying with an impairment of schizophrenia, which includes two-thirds with a cognitive impairment [5]; 24% experience hearing impairment [6]; 26-70% of people experiencing vision, or visual processing, difficulties with functional impact, impacting literacy and social engagement[7]; motor skills and gait difficulties [8] [9]; and a 2.5 fold increase in lifetime risk of developing early-onset dementia [10]. An individual experiencing one or a combination of these issues will be inappropriately placed within a social skills group, or a recovery college, for example, without prior recognition and accommodation of functional capacity; and addressing a range of disability support needs. It is critical to note a skilled professional workforce is required to make these support needs assessments.
Early intervention approaches that do no not recognise and address complex layers of disability faced by individuals, will not fulfil the aims of early intervention for the disabled person or for the NDIS. Nor will it save the NDIS money.
The proposed interventions do not reflect practice learnings or the factors associated with positive experience and outcomes, from the NDIS over the past 10 years. They do not substantially reflect developments in international research and practice during that period. For example, social skills training for people with psychosocial disability is currently not an intervention commonly used in practice due to the inconclusive evidence supporting efficacy [11]. Further, while the Review report recommends cognitive remediation as an intervention, a 2023 NDIA evidence snapshot reviewed 16 cognitive remediation studies and stated “results were mixed and not statistically significant, meaning we still do not know whether we should expect meaningful improvements on functional capacity and recovery. Finally, compensatory cognitive training…may be effective as well” [12]. A practicing occupational therapist has shared some of her concerns with the evidence-base for the listed early interventions, in Appendix 1 below.
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We recommend that early interventions delivered under Section 25 undergo detailed literature review and review of fitness for purpose, particularly if they are intended to be prescribed in a blanket manner. Consultation with the sector and the pursuit of co-designed models and market interventions may yield more effective and innovative approaches.
A potential systemic bias towards historical, and dated interventions, must be acknowledged. We must ensure any new models being proposed are reflective of current consumer, carer and community expectations, and contemporary research. This bias may be understandable if there is a prevailing perception of administrative ease through reverting to historical models, though these remain unproven in terms of government return on investment. While there may be cost-drivers and administrative convenience in reverting to previous models, or a temptation to conflate the development of NDIS models with concurrent model development through the Department of Health psychosocial support programs, solid process, genuine co-design, and rigor in model development is imperative to ensure fitness for purpose and for the NDIS to meet its stated aims. Conceptual considerations cannot be short-cut in the development of contemporary models. We do not want the NDIS Review to take the Scheme backwards for people with psychosocial disability.
5.3. WORKFORCE CONSIDERATIONS
The Review report indicates a particular ‘non-clinical’ workforce providing the prescribed early interventions proposed. This would not only restrict participant choice and control, but also restrict access to available skilled and effective interventions and practitioners. It will also introduce new layers of risk into the scheme, which clearly add their own significant cost to the Scheme.
The conceptual separation of “clinical” and “non-clinical” elements of the workforce is a false dichotomy and has no place in a contemporary disability system focused on optimising outcomes. This false dichotomy hails back to a bygone era where service options were either: a heavily biomedical and patriarchal public mental health system (‘clinical’) OR community-based assistance, welfare and help (‘non-clinical’). The separation of ‘clinical’ and ‘non-clinical’ supports appears to be applied by the NDIS Review to psychosocial disability only (See NDIS Factsheet on Psychosocial Disability), and there is no evidence that this is based on the perspectives of lived-experience or evidence-informed practice. Instead, the workforce planning and design must focus on fit-for-purpose, regulated and professional skillsets, and cost-effective practice governance for the NDIS, as the primary system addressing functional and support needs for people with substantial psychosocial disability
An integrated system recognising the whole-of-workforce will be needed to ensure the broader ecosystem can realise the vision of a safe step-up, step-down approach. This will be required if people are shifting between support levels, including foundational supports, targeted foundational supports, early intervention, and the NDIS (See Fig 76, p. 508).
We refer you to Attachment 1, the document titled Discussion Paper: Towards active citizenship for people living with psychosocial disability (October 2023) written by the NDIS Mental Health Community of Practice and supported by peak body Occupational Therapy Australia, where we explore contemporary models and interventions for a psychosocial disability ecosystem; governance and safeguarding considerations; evidence-based occupational therapy-led interventions aligned to the NDIS functional domains and a participation-focused social model of disability; and a detailed description of psychosocial disability workforce elements and their role in achieving functional-domain focused interventions and outcomes.
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We highlight that the Allied Health Assistance role is an underutilised and cost-effective resource, that could be developed to ensure the implementation of evidence-based interventions while maximising the reach of the allied health workforce. The role of an Allied Health Assistant is a growing, but at present significantly underutilised, skilled resource. We believe that the increased use of allied health assistants presents a significant opportunity for the NDIS that can be developed to ensure the implementation of evidence-based interventions while maximising the reach of the allied health workforce. The Allied Health Assistant workforce represent an opportunity due to their sharp focus on capacity building and the in-built clinical governance and delegation framework provided by the supervising Allied health professional. Important to note here the extensive benefits to individualised capacity building, risk reduction and access to workforce supply – this all for a similar hourly rate to support workers. It makes sense that AHAs should be used extensively across the Scheme.
6. CONCLUSION
We call for ongoing commitment to equitable access to the NDIS, and individualised supports, for people with substantial psychosocial disability. We propose that the NDIS early intervention pathway requires further conceptual clarity, explicit theory of change, access to a skilled workforce, and evidence-based interventions grounded in disability insurance principles, prior to implementation. We believe there has been insufficient consultation and co-design of the early intervention pathway for psychosocial disability, and recommend detailed review of the evidence-base and a clear consultation and co-design strategy be implemented.
Please see attached Paper 2: Discussion Paper: Towards active citizenship for people living with psychosocial disability (October 2023).
Written by Muriel Cummins, Sally Davison, Carolyn Fitzgibbon and Bianca Parsons, on behalf of the Occupational Therapy Community of Practice.
ABOUT THE NDIS OCCUPATIONAL THERAPY COMMUNITY OF PRACTICE
The NDIS OT community of practice is an NDIS-tailored workforce capacity building platform with national reach. It enables 10,000 OT’s, including approximately 2000 OT’s who work with people with psychosocial disability, rapid connection and response to a full spectrum of practice queries as they arise. It provides immediate connection to specialists and practice leaders; extensive supervision options; and NDIS tailored training and professional development. It enables and supports the OT community to rapidly build resources to respond to newly emerging trends or a need to adapt practice, for example during covid-19 pandemic responses. It is free to join, and enables small practices and OT sole traders across Australia to access benefits typically associated with large organisations, while preserving their unique contribution to the lives of people with disabilities.
This submission does not intend to represent individual members of the NDIS Mental Health Occupational Therapy Community of Practice, but rather represents the views of this collective group.
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REFERENCES
- https://www.sciencedirect.com/science/article/abs/pii/S0920996420303789
- ICF and its potential uses in the NDIS (unimelb.edu.au) ICF Core Sets (icf-core-sets.org)
- ANAO analysis of NDIA data, June 2023 Fig 2.1, p. 39 Effectiveness of the National Disability Insurance Agency’s Management of Assistance with Daily Life Supports | Australian National Audit Office (ANAO)
- Mental Health & Physical Health Research | Lived Experience Aus (livedexperienceaustralia.com.au)
- Howes, O. D., Bukala, B. R., & Beck, K. (2023). Cognitive impairment in schizophrenia: aetiology, pathophysiology, and treatment | Molecular Psychiatry (nature.com)
- Saperstein, A. M., Meyler, S., & Medalia, A. (2023). Hearing Loss Among People With Schizophrenia: Implications for Clinical Practice. Psychiatric Services (Washington, D.C.), 74(5), 543–546. https://doi.org/10.1176/appi.ps.20220226
- The Phenomenology and Neurobiology of Visual Distortions and Hallucinations in Schizophrenia: An Update - PubMed (nih.gov) (Retrieved Jan 2023)
- Petrescu, Petrescu, et al (2022). Neurological Soft Signs in Schizophrenia, a Picture of the Knowledge in the Last Decade: A Scoping Review.
- Feldman, Ron & Schreiber, Shaul & Pick, Chaim & Been, Ella. (2020). Gait, Balance and Posture in Major Mental Illnesses: Depression, Anxiety and Schizophrenia.
- Psychotic disorders may increase the risk of dementia (healtheuropa.com)
- Social skills programmes for schizophrenia - PMC (nih.gov)
- Cognitive remediation evidence snapshot | NDIS
- NMHCCF Official Statement on the National Disability Insurance Scheme (NDIS) Final Report
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Appendix 1 Critical analysis of the proposed psychosocial supports in the proposed Early intervention pathway, written by practicing OT from her perspective:
The NDIS review report and supporting analysis outlined proposed changes for the provision of supports for people with psychosocial disability. Some key statements from the report include:
“We recommend: A new specialist early intervention pathway into the NDIS for most new participants with psychosocial disability to support personal recovery as soon as possible. Participants could stay in this new pathway for up to three years.”
From ndisreview.gov.au/resources/fact-sheet/psychosocial-supports
“The evidence for psychosocial early intervention has grown significantly over the past decade. This evidence suggests that for some people with significant disabilities due to their mental health conditions, reductions in levels of disability can be achieved through use of evidence-based supports, addressing social determinants and strengthening personal motivation for improvement. It builds on people’s motivation to be as mentally well as they can be and as independent as they can be.
Early intervention can be effective in reducing impairment, improving activity and strengthening informal supports.1051 A 2016 literature review by the University of Melbourne found “significant evidence that people with psychosocial disability make significant gains in their capacity to engage in social and economic participation if they are offered early intervention”. This literature review and more recent studies identify evidence-based supports as including social skills training, cognitive remediation, supported employment, illness self-management and peer support.1052”
Page 516 NDIS supporting analysis
Terminology in the NDIS Review Report Literature
The NDIS Review Report appears to have used commonly understood terminology and applied new definitions to it. This has occurred with the term ‘early intervention’, and changing the meaning of psychosocial supports to being non-clinical.
In 2018, in a report commissioned Mind Australia, report, a new use of the term was proposed:
“While early intervention in regard to clinical mental health practice is well developed, its implications in regard to psychosocial disability services are not as well understood. Given the potential of early intervention to improve functional capacities in psychosocial disability and potentially reduce support costs, a literature review was considered an important contribution to the debate about the potential of early intervention in the mix of services that the NDIS might fund as the Scheme rolls out.”
Hayes, L., Brophy, L. et al (2018)
The selection of the interventions for Early Intervention were described in the report:
“In determining when a psychosocial intervention providing early intervention to people experiencing psychosocial disability is appropriate, the implications of key policies of the NDIS were considered.”
Hayes, L., Brophy, L. et al (2018)
The selection of the interventions for Early Intervention was criticised in this article (which was referred to in the NDIS review report, albeit not this point)
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“Further issues, common to all complex intervention research, include the fact that the implementation of many of the interventions we examined was driven by a local enthusiast and supported by the framework of a research study, and therefore wider implementation may be less successful.
Killaspy, H., Harvey, C., Brasier, C. et al., (2022)
The NDIS review literature has changed the meaning of the term early intervention to apply it to psychosocial disability, has used literature primarily from the diagnosis of psychosis to apply to all psychosocial disabilities, regardless of the underlying mental illness.
The NDIS review literature then choses it’s own interventions with consideration for the key policies.
And lastly, the NDIS review literature recommends a 3 year duration for the early intervention on the basis of referring to 2 articles, one of which is on a research trial which has not finished, and outcomes are not available.
Psychosocial supports.
Psychosocial supports has been redefined to being non-clinical supports while rolling out interventions that are described in the literature as being primarily clinical.
The OT community of practice is very supportive of the lived experience workforce and peer connections.
We also see value in the allied health workforce and its contributions to increasing capacity for people with psychosocial disabilities. It appears that many people with psychosocial disabilities are unaware or unsupportive of removing access to allied health. True consultation will be required on this, or risking not meeting people needs and also a protest further down the track when people realise that this access has been removed.
The NDIS is a unique and world leading program and the NDIS review of it identified many challenges for people with psychosocial disability. As Occupational Therapists we agree that there is a need for many changes to the support of people with psychosocial disability.
To summarise, the literature used to justify the proposed changes is confusing, with a new use of the term early intervention but applied to people with serious mental illness, no use of the term psychiatric rehabilitation and a picking and choosing of interventions, which are then also described as non clinical psychosocial supports despite the evidence being clearly developed by clinicians.
The NDIS review committee may have their own pragmatic reasons for developing the planned changes, but it is not accurate to base these decisions on the current literature used.
Risks of continuing to use support workers without allied health input
There are multiple risks of continuing to use support workers without allied health input. This includes continuing of the food court intervention, the taxi driver service and low employment and social connection outcomes.
The food court intervention
The food court intervention refers to the common experience of someone with psychosocial disabilities being transported to somewhere of convenience or of interest to the support worker, such as an air conditioned food court, a local café or fish and chips by the sea. The two people often sit there together for hours on their phones without interacting. The food court intervention often occurs for hours every week.
Why does it occur? Many people with psychosocial disabilities articulate needs for social interactions but often are living in poverty. The majority of support workers do not have the skills to be able to assist the person to identify other opportunities to meet people, or to assist with budgeting for social outings. Meanwhile the person with psychosocial disability either feels lonelier or connected to a support worker who will only be temporarily in their life.
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The free taxi service
Many people with psychosocial disabilities have difficulties in using public transport. Reasons for this difficulty may include anxiety, trauma, paranoia, increased sensory difficulties such as the sound or smell of other people or the heat while waiting for a bus, or lacking the finances to afford transport etc
The majority of support workers assume the role of free taxi service, driving people in air-conditioned comfort to their appointments and decreasing their capacity to independently transport anywhere. When this time limited service finishes, the person will be no closer to being able to independently travel.
Disability Employment services
Disability employment services have a low rate of employment for people with psychosocial disabilities. Further changes will be needed to the way that these services are provided.
Design considerations for psychosocial disability
The design of supports for people with psychosocial disabilities is challenging given the extremely wide and variable range of needs, functional impacts and social determinants of disabilities.
The many diagnoses that can lead to psychosocial disabilities includes schizophrenia, bipolar disorder, complex and post traumatic stress disorder, obsessive compulsive disorder, anxiety disorders, depression, dissociative identity disorder, anorexia nervosa and functional neurological disorder. The mental health diagnoses are frequently co-occurring with physical impairments including back pain, ataxia, parkinsonism, hearing loss, visual loss, chronic fatigue, fibromyalgia, hypermobility, acquired brain injuries , dementia metabolic syndromes which include cardiac, respiratory, sleep and diabetes and co-occu5ring substance use disorders including tobacco, alcohol and substances.
The resulting disabilities can impact on multiple functional areas from employment and learning, self care and self management, communication and social participation and mobility.
The social determinants of disability include poverty, unsuitable housing and homelessness, higher rates of victims of crime, incarceration, food insecurity and racial/ethnic discrimination. Homeless populations had a 30 fold higher prevalence of schizophrenia than the general population
There is a risk with many psychosocial interventions of missing the underlying issues that are co-occurring or impacting on it. Two of the interventions proposed in the NDIS review model will be discussed – cognitive remediation and social skills programs.
Cognitive remediation
It is well recognised that people with schizophrenia have cognitive impairments, but it is less well recognised that the cognitive impairments may be impacted or due to the high rates of early dementia, acquired brain injuries, attention deficit disorders, brain fog from chronic fatigue, sleep disorders, hearing and visual impairments etc. Thorough assessments of these underlying factors would determine whether cognitive remediation benefits or another intervention would be useful and cognitive remediation literature recommends neuropsychologist screening for dementia. Given that cognitive remediation is described as a non-clinical psychosocial support, this is not inclusive of an assessment process prior to commencing. This could then result in people attending cognitive remediation groups without meeting their underlying needs. The literature on cognitive remediation is usually inclusive of allied health support to translate to real world examples. The use of supports without training may not achieve the same outcomes and the evidence that non clinical support staff can achieve similar results is not evident in the review literature.
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The research on cognitive remediation programs has been primarily on schizophrenia and requires further randomised control trials on other diagnoses to determine their suitability for people with psychosocial disabilities from other mental health diagnoses.
In the NDIS review model, cognitive remediation groups would be one of the standard interventions offered to people with any psychosocial disability which may be a waste of money and also not beneficial.
Social skills groups
The NDIS review recommends that social skills groups are key components of the psychosocial supports.
There is a wide variety of factors which contribute to a person with a psychosocial disability having decreased social connections.
This may include personal contributors, social determinants and reduced occupational engagement.
Personal contributors may include paranoia, anxiety, trauma, recent domestic violence experience, decreased self worth, body image disturbance, hallucinations, intoxication, reversed sleep cycle, low mood, low motivation, poor mobility, chronic pain and low energy.
Social determinants may include being unable to afford to attend social occasions, transportation, housing, clothing etc.
Many people with mental health conditions have auditory processing disorder which results in decreased ability to process conversations in background noise. For many people they experience this as anxiety and are unaware of the sensory contribution to this and so are unable to problems solve to organise more suitable environments for socialising.
The decreased occupations of many people with psychosocial disabilities also reduce the opportunities for engaging in social contact. Many people in the community make friendships through work, sport, volunteer work, study, leisure etc. A focus on greater participation in key occupations may also result in increased social interactions.
The proposed psychosocial interventions to meet these needs include social skills groups and peer connections. Whilst these interventions will likely meet some peoples needs, they will be missing the majority of peoples needs due to the reasons described.
Dated models of neuroscience used as basis of interventions
The psychosocial interventions that are proposed are based on dated models of neuroscience. In the last 2 decades there has been huge developments in the understanding of the neuroscience of mental illness. This has included predictive processing or computational psychiatry models and functional brain network research.
Predictive processing/Computational psychiatry
The predictive processing model of neuroscience, also referred to as computational psychiatry describes the brain as pre-emptively guessing the world around it, and then comparing to incoming sensory input and updating any errors in the prediction. When mental illness develops, there are changes to the brain and its ability to utilise this predictive process effectively. We will provide some simplified examples of symptoms explained under this model.
Applying the predictive processing model to hallucinations describes, the brain as “guessing” that there is a voice (auditory hallucination) or sight (visual hallucination) but then not being able to update the brain to provide the information that there is no voice or sight there.
Paranoid delusions can be understood as an inaccurate prediction of the association between two concepts , (for example the TV is on, therefore the TV must be talking about me) with the brain not updating the information based on the reality.
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Social interactions can be impacted by reduced predictions of facial expressions, reading of internal body cues (interoception) and apathy and low energy.( Jeganathan J, Breakspear M. 2021 )
In PTSD, the trauma of the past is predicted to be occurring again.
In anorexia nervosa, people see themselves as being grossly overweight and are unable to update their brains on the reality of their thin bodies.
In Functional Neurological Disorder, the brain predicts that the limbs are unable to move and then the limbs are paralysed and unable to update this reality.
This is a very simplified version of these concepts but hopefully illustrate that a new set of clinical interventions could be developed that are built on the understanding of it. Australia could lead the development and funding of these models. There are world leading researchers in Australia in this area including Mark Miller and Michael Breakspear.
In the meantime, it is poor practice to roll out a suite of interventions that are not based on the most up to date scientific information.
Functional brain networks
Schizophrenia research has also discovered that there are multiple functional brain network changes in schizophrenia. ( van Dellen, E., Börner, 2020) This explains the widespread range of symptoms from motor abnormalities, cognitive impairment and mental health. The motor abnormalities are found in over 50 per cent of people with schizophrenia and have some similarities to parkinsons, as the same brain networks are impacted. People with schizophrenia require neurological support to improve posture, mobility, gross and fine motor skills, energy levels in order to improve functional capacity. There has also been a link of motor abnormalities to poor functional and social outcomes in schizophrenia. (Nadesalingam N, Chapellier 2022)
Conclusion
The NDIS review has proposed major changes to the disability support available for people with psychosocial disabilities. The proposed changes will be costly and require careful analysis to ensure that this is money well spent. There needs to be a more in depth analysis of psychosocial supports, early intervention, the needs of people with psychosocial disability and further co-design.
References
ndisreview.gov.au/resources/fact-sheet/psychosocial-supports
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