The National Disability Insurance Scheme and Psychosocial Disability Advocacy Brief October 2013 Draft for Consultation Flags The National Disability Insurance Scheme and Psychosocial Disability Advocacy Brief Page 1
Introduction In the first few months since the rollout of the National Disability Insurance Scheme (NDIS) across several launch sites, the mental health sector has been working to understand the implications of this landmark initiative for people with psychosocial disability associated with mental illness. In our consultations with the sector, as well as through our targeted capacity building work (funded by the National Disability Insurance Agency (NDIA)), the Mental Health Council of Australia (MHCA) has heard feedback relating to several common themes. This Advocacy Brief summarises stakeholder feedback and outlines the critical issues that consumers, carers, service providers and the non-government mental health sector need resolved if the NDIS is to live up to its potential and benefit people with serious and persistent mental illness. Broadly speaking, the MHCA welcomes the NDIS and the role of the NDIA, especially given the bi-partisan commitment to double the funding available to support people with significant ongoing disabilities over the next few years. We believe it is absolutely appropriate that the scheme includes people with significant psychosocial disability related to mental illness. The objectives of portability across Australia, life-long support if required, and greater personal choice and control over the services people receive all promise considerable benefits for both the people directly affected and the people who care for them. However, there is currently widespread confusion in the mental health sector about how the NDIS will operate in practice to the benefit of people with psychosocial disability. While there are of course many unanswered questions across the disability sector, the uncertainty in the mental health sector stems in part from the way that eligibility for the scheme is set out in legislation rather than the inevitable teething problems that might occur with any new initiative. Eligibility and entry into the Scheme Perhaps the most fundamental issue at this stage is the current requirement that someone be deemed to have a permanent impairment in order to qualify for an individualised package of support. While permanency may be a meaningful concept for some kinds of disability, in the context of mental illness it is less clear. Diagnosis of a mental health condition, even a very serious one, is an inexact process often taking many years. Further, the notion of permanency contradicts the well-understood principle that people with mental illness will undergo individual recovery journeys, and that this process will inform whatever person-centred supports are required at any given time. Consumers, carers, governments, clinicians and service providers have all worked hard over recent decades to embed recovery as the organising principle for quality service and support, and many organisations, particularly in the community mental health sector, now structure their services to assist people to recover on their own terms and at their own pace. Requiring that someone be assessed as having a permanent disability, at whatever stage of their lives or their illness, can be seriously demoralising and counterproductive. Nevertheless, people with long term psychosocial disability deserve the same degree of support as people with any other kinds of disability as the designers of the NDIS have recognised. The National Disability Insurance Scheme and Psychosocial Disability Advocacy Brief Page 1
Related to this is the fact that most people with psychosocial disability have impairments and support needs that fluctuate in severity and in nature over their lifetimes. Some of these needs are predictable and others are not; they cannot necessarily be identified through a single assessment but rather require the flexibility of ongoing consideration and refinement, taking into account the input of consumers, carers and families. The mental health sector (at its best) currently helps people in different stages of illness/disability to decide what is most important to their recovery at any given point in time and to respond to those needs appropriately. For some, it is only after many such interventions (and often over many years) that it becomes clear that ongoing support of a particular kind is needed for the foreseeable future, while others may reach a point where they no longer require or choose ongoing support. However, it is often difficult or impossible to predict which people will need longterm support and who will exit the system, having fully recovered. We are not sure that the permanency principle currently embedded in the scheme can be reconciled with these realities. While we still have a long way to go in supporting people with mental illness and psychosocial disability, the mental health sector has developed approaches over many years for managing this diverse and unpredictable spectrum of illness/disability. We hope that the NDIA can learn from the excellent work in the mental health sector and adapt its approach accordingly so that the needs of people with mental illness/psychosocial disability can be met. Scheme design Another core concern relates to decisions that have been made by Commonwealth and State/Territory Governments about which existing community sector mental health programs are in scope for the NDIS. While there is a guarantee of continuity of care for existing clients of these programs, it is not at all clear how people that might benefit from such schemes in the future, but who would not qualify for full NDIS participation under current arrangements, will receive the right care and support. Episodic and fluctuating needs mean that such programs (including, at the Commonwealth level, Day to Day Living, Personal Helpers and Mentors, Partners in Recovery and Targeted Community Care) have a high rate of turnover: people enter these programs and then exit, sometimes quickly and sometimes over many years, having received the support they needed and being further on their path to recovery. With such programs in scope for the NDIS, the mental health sector needs assurance that less disabled and future mental health consumers and carers will not miss out on services, leaving them worse off, as an unintended consequence of a major initiative originally intended to deliver more support. Many of the community-managed mental health programs that are currently in scope for the NDIS appear to deliver services that we would interpret as providing early intervention and mental health promotion rather than ongoing or life-long support. We are yet to see from the NDIA a satisfactory definition of early intervention from a psychosocial disability perspective, but the fact that a person needs to have a permanent impairment before receiving early intervention (which will in turn reduce that person s reliance on the service system in the future) is also profoundly counterintuitive. Indeed, if the uncertainty around early intervention is not resolved, we anticipate a greater burden on the service system associated with (for example) additional presentations at emergency departments, increased reliance on crisis accommodation services and a greater risk of people with mental health issues encountering the homelessness and criminal justice systems. The National Disability Insurance Scheme and Psychosocial Disability Advocacy Brief Page 2
Furthermore, there appear to be substantial variations in what State/Territory funded community sector mental health programs will be in scope for the NDIS, with related funds transferred to the Commonwealth. This raises the prospect of inconsistency in service offerings delivered through a scheme that is intended to be national, and seems to run counter to the broader aim to simplify existing Commonwealth, State and Territory arrangements for delivering disability services. Solutions It is with these challenges in mind that the MHCA can suggest some ways forward. The proposals below are a starting point, and we look forward to hearing innovative ideas from stakeholders about other potential solutions. Commonwealth and State/Territory Governments need to commit to maintaining, and indeed expanding, current service levels for current and future consumers of mental health services, regardless of whether those consumers (who may also be carers of people with mental illness) are deemed eligible for the NDIS or are currently accessing mental health services. The NDIA needs to explain in detail: What programs and services would constitute early intervention, as opposed to other kinds of programs and services to be funded under the NDIS, from a psychosocial disability perspective; and What kinds of referral and support people with psychosocial disability and/or mental illness who are assessed as being Tier 2 NDIS participants (that is, not eligible for a full (Tier 3) individualised package of support) can expect to receive beyond the status quo, and how outcomes for these people will be monitored. A formal process is needed to develop the right approaches to meeting the needs of people with psychosocial disability through the NDIS. We suggest that a new, highlevel Psychosocial Disability/Mental Health Expert Advisory Group be formed, with resources and support from the NDIA, to advise the NDIA Board on the best path forward. The Expert Advisory Group must include representation from the nongovernment mental health sector if its deliberations are to be meaningful and credible. The NDIA needs to collect and make available to the mental health sector: Information about how assessment is being conducted, including which assessment tools are being used for psychosocial disability, why these tools were chosen, and who is involved in the assessment process; Data on the specific reasons why people with mental illness are being assessed as either eligible or ineligible for full participation in the NDIS, The National Disability Insurance Scheme and Psychosocial Disability Advocacy Brief Page 3
including information on how a determination of permanency of impairment is made in practice; Information about how participants with psychosocial disability are supported to make decisions about their package of care that are in their best interests, including the roles of carers and service providers/workers who have a preexisting relationship with those participants. The NDIA needs to involve the mental health sector to a much greater degree in monitoring and evaluating the effectiveness of the NDIS in meeting the needs of people with psychosocial disability. This should include, at a minimum: An early warning system to identify and act on problems well before any other formal evaluation process is complete; Timely and mutual communication flows between the NDIA and the sector, including a presumption in favour of releasing any data or other information to mental health stakeholders wherever possible; A robust process to identify the extent and nature of unmet need and the barriers to those needs being addressed. The NDIA needs to acknowledge the serious difficulties that the mental health sector is experiencing in understanding and (in the launch sites) implementing the NDIS. This could mean, among other things, appointing senior officials within the NDIA to oversee its work to resolve issues specific to the mental health sector. The National Disability Insurance Scheme and Psychosocial Disability Advocacy Brief Page 4
The National Disability Insurance Scheme and Psychosocial Disability Advocacy Brief Page 4