mental health carers nsw MHCN

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600

By electronic submission 30/03/2021 Dear JSC NDIS,

Concerns by Mental Health Carers NSW Inc around the Introduction of Independent Functional Assessments and their Governance and Applicability to Psych-social Disability

Mental Health Carers NSW Inc., (‘MHCN’), is the peak body for families and carers of people who experience mental illness in NSW and a member of Mental Health Carers Australia, the national mental health carer peak. MHCN heard very serious concerns from families and carers of people with psycho-social disability about the introduction of Independent Functional Assessments (IFAs) similar to those expressed by other advocacy bodies and notably Professor Bonyhady, one of the most important promotors of the original concept of the National Disability Insurance Scheme (NDIS).

The Conception of the NDIS and the Basis for Reasonable and Necessary Funding MHCN agrees entirely with the contention of Professor Bonyhady that the concept of the NDIS is completely different from other circumstances in which Independent Functional Assessments are made, classically in Australia, workers compensation and compulsory third-party personal injury motor vehicle insurance schemes. Such schemes do also deal with disability and even use a common term in ‘reasonable and necessary’ supports being the allowable, fundable support which these schemes must provide.

However, such schemes typically deliver support to people who have been injured and do not need to cover the full range of potential disabilities which the NDIS must cover. This means not only that there are many disability issues and causes of incapacity that these simple schemes need not contemplate. But it also means that there is for such participants a notional base-line of ability and functionality to measure a person’s subsequent experience of disability against; (that is the fitness they enjoyed before injury). As Prof Bonyhady says, under these insurance schemes “the level of functional impairment is the only consideration which determines funding.” Unlike the NDIS, there is no allowance in accident compensation schemes for individual life goals, capacity building or the role of informal supports when determining funding levels. Therefore, implementing IA under the NDIS to determine reasonable and necessary supports is both much more complicated and fundamentally different to accident compensation schemes.‘’

MHCN strongly endorses this proposition and agrees that introducing such a concept to the NDIS scheme would fundamentally alter the whole basis of the empowering objectives of the scheme, empowerment and compensation being fundamentally different and far inferior to the human rights-based conception of the NDIS. MHCN Mental Health Carers NSW Inc. Funded by the NSW Mental Health Commission Building C, Suite 2.02, 33 Saunders St, Pyrmont NSW 2009 Carer Connection Helpline: 1300 554 660 – Free Call P: (02) 9332 0777 W: www.mentalhealthcarersnsw.org E: MHCNadmin@mentalhealthcarersnsw.org

Issues with Independent Functional Assessments as Conceived

MHCN is not opposed to the introduction of better and more effective, and consistent assessments for NDIS packages. Currently, advocacy makes too much difference to outcomes which indicates that the processes are immature and in need of further development. However, it is far from clear that this means people being assessed with larger packages as a result of advocacy are receiving more then they need or are entitled too, (as has been salaciously suggested on the basis of very slender evidence, if any). On analysing available figures, it seems far more likely that when dealing with people with effective advocates (who are able to understand and defend the lawful entitlements of NDIS participants), that NDIS assessors provide the level of funding intended and stipulated by the legislation. When such assistance is not available to assessors, MHCN is aware of many cases where it seems the assessment has erred on the side of caution and substantially underassessed participants needs.

Such a lamentable outcome, so serious for scheme participants and their families and carers (who are always effectively the ‘providers of last resort’), is particularly likely given the pervasive fact of massive under provision of services and rationing of care in Australia’s welfare, human and mental health sectors, which is the common experience of people who use such services and the subject of many, many inquiries and reports.

However, there are special difficulties which apply to the nature of psycho-social disability which absolutely prohibit the application of any simple, linear, ‘objective’ assessments to disability support needs, especially by people without specialised training, skill and experience in psycho-social disability.

A psycho-social understanding of mental health, mental illness and related disabilities, (the most modern and sophisticated available), implicitly rejects a ‘medical model’ and with it the:

"attempt to make sense of problems by drawing on research into patterns/regularities in bodily structure, function and dysfunction, and that while this is appropriate and productive for many bodily problems, psychiatric diagnosis is inherently limited in its capacity to make sense of emotional/ psychological distress."

Attempts to apply simple models of function and disfunction to psycho-social disability assessments are therefore doomed. The conceptual incompetence of our current understandings and characterisations of mental illness means effectively that we characterise clusters of symptoms as different diseases and disorders and constantly create new diagnoses to account for newly detected combinations. Any linear calculation from diagnosis to disability to reasonable and necessary support will fail due to the inadequacy and conceptual incompetence of our models of mental health and mental illness.

Two people with the same diagnosis can have wildly different experiences of symptoms and equally diverse reactions to those symptoms and treatments, (especially prescribed drugs) and subsequently diverse practical limitations in living a normal life. This means realistic assessments of psycho-social disability must rely instead upon an understanding of the individual’s history and experiences of disability over time.

The assumption that a person without knowledge of the history of a person can make an adequate assessment, particularly when the person being assessed is asymptomatic or experiencing low levels of distress at the time, has been widely rejected by mental health carers when asked about this, especially if assessments are to be mainly based on the recollections and reports from the scheme participant or instead to be based on the administration of standardised tools by unskilled strangers.

Fully Fair and Independent Functional Assessments for Psycho-Social Disability

The NDIA is well aware that the level of disability experienced by people with a psychosocial disability will vary over time. This is significant distinction from people with a physical disability whose disability tends to be more stable. Physical disabilities assessments may be appropriate to do at any point in time because of their inherent mechanical stability. However, the applicability of point in time assessments to psycho-social disability is far less straightforward. Any functional assessment model for psycho-social disability needs to allow for the development of an assessment over time to capture fluctuations in disability and residual capacity, which may not be assessable, especially externally, when not being experienced.

Naturally, the need to complete an assessment within a reasonable time will have to be balanced with the need to allow for measurement of psycho-social function at different points in time. Such independent assessment MUST be structured in a way so that a reliable, evidenced, history of functional capacity is captured and taken into account. The best evidence of this will be: self-reports supplemented by reports from treating services and clinicians and families and carers, based on records and recollections.

Assessing a person’s psycho-social disability or interpreting the reports of others accurately, clearly requires specialist skills to effectively analyse the evidence, specific skills and training which the current plan for implementation of IFAs do not require Assessors to have. There is a real risk that the symptoms of mental illness could interfere with an individual’s ability to participate in an assessment process at a time when they are experiencing their highest level of functional impairment. This skill must specifically be in psycho-social assessments and not in general disability or the like, which may offer no particular insight into the complexities of psycho-social disability.

For instance, an individual may not recognise the need for an NDIS package at a time when they are very unwell and seek to undermine the assessment process and minimise their experience of disability. Skill is required to recognise such conduct and to factor it into assessment. Failure to provide assessors with such skills could harm the interests of vulnerable people and their families and carers who will have to fill the care vacuum if an inadequate plan is approved, (should the person concerned still have any carers or family to rely upon).

Even just attending for a ‘point-in-time’ assessment could cause relapse inducing stress for many people and training is required to allow assessors to address this to allow assessment to even begin.

MHCN supports the idea that IFAs can be made to work fairly and to help people get the care they need and potentially increase access to the NDIS by people experiencing psycho-social disability (significantly under-represented), and consistency in the supports offered. If that is the intention of the NDIA to create a truly fair, transparent and equitable system, MHCN would support considered measures to implement such an approach in an ethical and trauma informed way.

This can be done by both eliminating obvious and serious conflicts of interest, such as those created in the awarding of contracts to provide assessment services to wholly owned subsidiaries of service providers, which were themselves banned from offering such services). Such blatant and deliberate evasion of rules against conflict of interest between assessment services and those offering the services assessed to be delivered, surely being unacceptable to the Agency charged with the rigorous management of the scheme, (due to the real and live conflicts still left in place?) MHCN would expect such contracts to be instantly cancelled now that these flimsy and pernicious attempts to undermine the probity of the scheme has been reported.

• However an even more serious long term conflict can also be nipped in the bud by learning from other injury or disablement assessment processes from existing insurance schemes, particularly those notorious for their poor treatment of psycho-social claims, (like many of Australia’s compulsory third-party personal injury schemes or worker’s compensation schemes).

Learning from the more obvious failings of these schemes, MHCN believes that truly independent and ethical IFAs could be achieved by:

- Eliminating long term institutional biases and risks of these developing by making sure IFA Assessors are truly independent; in particular are not paid by anyone or anything with responsibility for the financial management of the scheme (like the NDIA) with a clear, vested financial interest in minimizing support payments. Truly independent Assessors and all their work must be paid through a separate department like the Attorney General’s. This is to ensure that there is no conflict of interest between doing a fair assessment and the financial interests of the Assessor’s employer/service purchaser/funder, explicit or implicit, now, or likely to emerge over the future development of the scheme, (as it has is so many others). The fundamental importance of addressing such institutional biases and conflicts of interest cannot be underestimated if fairness and the appearance of fairness is any kind of practical priority.

- Making sure Assessors have an ample brokerage budget to pay for the best evidence; rather than expecting potential scheme participants to fund medical reports and assessments. There should be sufficient for each case to obtain medical reports from all relevant treating doctors, occupational therapists, counselors and even assistance to families and cares in providing the best evidence possible which will allow sufficient understanding of the fluctuations of disability and capacity to make a sound assessment of the extent of the psycho-social disablement, chronic and/or episodic and the support needed to be funded as a result.

- Ensure all Assessors have specialist training in assessing psycho-social disablement and evidence of the same and in interacting with claimants and their families and carers in a trauma informed way. Skills related to assessing physical disablement are no more applicable to psycho-social disablement than 'rocket science' is to 'brain surgery'. A written matrix tool or assessment tick box, especially when administered by those without specialist understandings of mental illness and psycho-social disablement has often proven barren and in the case of now discredited 'suicide risk assessment tools' even dangerous, (to the extent all such tools have been abandoned by NSW Health in the latest Policy Directive on the subject). Any attempt to have such assessments done by people without specialist skills would amount to dereliction of the duty of care to scheme participants, current and eligible; a very vulnerable group.

- The Assessors and assessment processes should have a clear mandate, transparent records and processes, all instructions and decisions published and care should be taken to ensure that neither cost nor the incidences or limitations of disablement were ever an obstacle to a person who qualified from getting assessed for entering the NDIS. We must ensure we eliminate cost obstacles to people experiencing disability in gaining the necessary reports or other evidence from services or clinicians to get vital disability support. Done right this could help pave the psycho-social pathway as well as any other path to entry to the scheme.

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The gold standard would be to co-design the processes and forms for assessments with consumers, carers, Assessors, their funding Department (when determined) and the NDIA to ensure not just these basic governance issues are covered, but that the un-anticipatable impacts of complex trauma are in fact fully anticipated and reconciled by well-designed processes, supports and rules that caters for the individuality of every psycho-social disability.

MHCN is happy to elaborate further (or together with the MHCA) on these concerns if required.

Many thanks,

Jonathan Harms,

CEO, MHCN