Getting the NDIS right for people with psychosocial disability
Feature Story by Frank Quinlan
The National Disability Insurance Scheme (NDIS) has great potential to improve the lives of people with psychosocial disability associated with mental illness, and the Mental Health Council of Australia (MHCA) remains one of its strong advocates. While many lessons will be learned in the trial sites over the next few years, if we are to meet the needs of these people it is absolutely crucial that we take action now to get the broad architecture of the scheme right.
This article describes some of the major risks for mental health stakeholders as the NDIS is rolled out, including the very real prospect of some people missing out on services as an unintended consequence of decisions made due to a tight implementation timetable. It also proposes some ways to address these challenges in partnership with consumers, carers, service providers and government.
What is Psychosocial Disability?
Psychosocial disability is an internationally recognised term under the United Nations Convention on the Rights of Persons with Disabilities, used to describe the experience of people with impairments and participation restrictions related to mental health conditions. These impairments can include a loss of ability to function, think clearly, experience full physical health, and manage the social and emotional aspects of their lives.
Psychosocial disability relates to the ‘social consequences of disability’ - the effects on someone’s ability to participate fully in life as result of mental ill-health. Those affected are prevented from engaging in opportunities such as education, training, cultural activities, and achieving their goals and aspirations. Not everyone with a mental illness will have a level of impairment that will result in a psychosocial disability.
It’s also important to remember that there is a strong focus on a recovery orientation in mental health, as different levels of mental ill-health are variable and not permanent.
Under the NDIS legislation, in order to be eligible for an individually funded package of support a person needs to have a ‘permanent impairment’ or an impairment that is likely to be permanent.
The ‘permanent impairment’ requirement makes sense when you consider many physical disabilities that may result from impairments such as blindness or reduced mobility which leaves someone unable to live and work without support.
However, these guidelines are more problematic when you consider mental illness. Most people with psychosocial disability have needs and impairments that change in severity and in nature over their lifetimes, sometimes changing very quickly. Even people who experience severely debilitating mental illness aren’t always going to need support and be in the mental health ‘system’.
For two people with precisely the same condition, it can be impossible to predict which one will need long-term support and the idea of a ‘permanency of condition’ model doesn’t fit with the realities of mental health.
With this in mind, the MHCA remains concerned about the implications for the very large numbers of people who experience mental illness who may not be eligible for individually funded support under the NDIS because they are not deemed to have a permanent impairment, or because their impairments are not deemed sufficiently debilitating.
The MHCA doubts that the permanency principle currently embedded in the scheme can be easily reconciled with these realities. Feedback from the trial sites indicates that these requirements are already causing confusion.
If someone with a serious mental illness does not qualify for an individually funded package of support, it is not yet clear how the NDIS will benefit them. On the contrary, current indications are that people who do not meet the access requirements for individually funded support will need to rely on existing systems of referral and support, the very systems that are currently under-resourced, are frequently ineffective, and are in some cases being subsumed into the NDIS in any case – so they will no longer exist to provide services to non NDIS recipients.
Of the 489,000 people with serious mental illness in Australia, the Productivity Commission estimated that only 60,000 would qualify for individually funded support because they have a serious and persistent mental illness with complex interagency needs. Our concern is that a huge number of consumers who require a high level of support at different points in their life could be left behind.
Designing a fair assessment process
It is crucial that the assessment process incorporates three features if it is to adequately cater to people with psychosocial disability.
First, the process must involve carers, service providers and other support people to the maximum extent possible. These people live and work ‘on the ground’ alongside people with psychosocial disability. They have the experience and knowledge that is essential to inform the design of an effective package of support. They understand the needs of individual mental health service consumers, and know what does and doesn’t work. Their advice does not replace that of consumers, but it is often an essential element of designing a plan that will work for consumers.
Relying solely on conversations between consumers and the National Disability Insurance Agency (NDIA) assessors to determine the nature and extent of consumers’ long-term needs is often not sufficient. Assessors must be skilled enough to be able to collect information from the range of supports in a person’s life, whilst still keeping that person’s choices at the centre of a plan.
Second, any tools used to conduct assessments must be specifically appropriate to assess the support needs of people with psychosocial disability related to mental illness. Predictably, individual assessment cannot be obtained using a one size fits all approach.
Third, NDIA staff conducting assessments must be both trained and experienced in mental health issues. Understanding the needs of someone with psychosocial disability requires specialist skills and the ability and time to develop trust with consumers, carers and service providers. We hope the trial sites will tell us quickly whether or not the tool currently being used by appointed NDIA assessors is appropriate in this regard. We must ensure the expertise of the mental health workforce is not lost or dumbed down.
The cart before the horse?
The current task of the NDIA in creating the NDIS has been likened to ‘designing an airplane as it is taking off the ground’. This assessment suggests that programs are being rolled out and implemented long before they have been properly designed and tested. To extend this analogy, we might say the airplane (the NDIS) is being built from an existing airplane that is currently flying (the current mental health and disability system).
This highlights the fact that programs that are already running to various degrees of success risk being dismantled long before the NDIS has been implemented and is operating effectively. Because each state and territory manages its mental health and disability sectors in different ways, the roll out of the NDIS has necessitated the development of bilateral agreements with the Australian Government (the Commonwealth) about how the NDIS will operate in each jurisdiction. Some agreements have already been reached between the Commonwealth and state and territory governments about which existing mental health programs – and what proportions of their funding – are ‘in-scope’ for the NDIS. Unfortunately these decisions were made without consultation with the mental health sector and may have unintended consequences.
Amongst other things, the bilateral agreements determine which currently funded services will be rolled over into the NDIS. With much of the existing funding around disability support and some or all of the funding for existing community mental health services being rolled into the NDIS, there is likely to be variation from one state/territory to another in how to assist people who will not receive individual NDIS-funded supports.
Further, there is a great deal of confusion about how Commonwealth funds will be spent (such as those used to deliver the Personal Helpers and Mentors Program, and the Partners in Recovery Program).
At the trial sites these arrangements appear to be resulting in a significant proportion of people with mental illness losing access to essential support services because they do not meet the NDIS access requirements.
If replicated nationally, decisions about in-scope programs are likely to lead to reduced services for large numbers of people with serious mental illness who are ineligible for the NDIS. Given the high levels of unmet need and well-established under-investment in mental health in all jurisdictions, the MHCA is deeply concerned that the introduction of the NDIS could exacerbate rather than eliminate the problems that people with mental illness currently have in accessing timely and effective services in the community.
The mental health sector and the broader Australian community need assurance that 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.
The role of early intervention
Many of the mental health programs that are currently in-scope for the NDIS appear to deliver services that provide ‘early intervention’ rather than ongoing or life-long support. These programs fund services that are often temporary (and even crisis) interventions to help people manage or overcome negative emergency circumstances that could rapidly escalate.
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 counterintuitive. Indeed, if early intervention services are reduced from existing levels, we will certainly see an increase in mental illness, psychosocial disability and a greater burden on the service system, including additional presentations at emergency departments, increased reliance on crisis accommodation services, and a greater risk of people with mental health issues encountering the criminal justice system. In the context of an insurance scheme which ought to reduce future risks, these arrangements appear misguided.
We need to see the development of a definition of early intervention from the perspective of psychosocial disability. Such a definition can only be developed in close consultation with those in the mental health sector who have an intimate understanding of the nature of effective non-clinical early intervention services.
These issues are manageable if governments and the sector remain committed to finding solutions. Below are some thoughts on how we can begin the process, but many more ideas will be needed to reach a final destination that meets the needs of people with psychosocial disability and their carers.
The highest priority for governments right now is to formally commit to maintaining or increasing existing funding and service levels for current and future consumers, regardless of whether they are deemed eligible for the NDIS or are currently accessing existing mental health services.
Programs and services currently available to people with psychosocial disability that are in scope for the NDIS need to be mapped in each state and territory. This will allow a better assessment to be made whether future gaps in services will be created as the NDIS is rolled out. Work must then begin immediately around the development of NDIS Tier 2 supports.
To date, the design and implementation of the NDIS has focused on those people whose level of disability means that they will be eligible for funded packages of support – called Tier 3 support. Little has been said about the development and roll out of Tier 2 supports under the NDIS. Tier 2 will aim to refer or support people with a disability, their families and carers who do not meet the access requirements for Tier 3 funded support services, to access mainstream community services.
It seems a difficult or impossible task to identify who would be eligible for Tier 3 when we still do not understand what services will be available for someone in Tier 2. For example, whether someone with a substantial disability would require a fully funded package of support depends largely on what will happen in the absence of a package. If Tier 2 services are widely available and able to meet their support needs, then we might conclude that the number of people in Tier 3 would be limited. By the same token, if Tier 2 support does not fill well-known gaps in psychosocial disability support, then the number of people who will require Tier 3 support will be higher as impairments related to psychosocial disability increase in severity or become permanent. It is therefore urgent that scheme design quickly focusses on describing Tier 2 support and that consultation about these issues include Tier 2 participants, and Tier 2-funded services, as a key step.
Involving mental health stakeholders in policy development
Adequately addressing the issues explored in this paper will require significant work on the part of governments, with close and meaningful engagement and consultation with all relevant stakeholders. A formal process is needed to provide advice to the government about the best approaches to meeting the needs of people with psychosocial disability. This needs to be done at the national level, at state and territory level, and in the trial sites. It is important to remember that protocols for implementation are being developed in each site on a day-to-day basis by service providers, consumers, and carers, with little support from their peers outside launch sites, who do not yet understand the complexities of NDIS implementation. The whole sector needs to be involved to share the load and support them.
Whatever structures are established, they must also include stakeholders from the non-government mental health sector who play such a large role in the lives of people with psychosocial disability, and most importantly, consumers and carers – only this will ensure that the eventual solutions are meaningful and credible.
The recent appointment of Eddie Bartnik to the NDIA as special advisor on mental health is very positive news, and the MHCA looks forward to the NDIA’s continuing engagement on the issues we raised.
Involving mental health stakeholders in evaluation and monitoring is critical.
Finally, governments need to involve mental health stakeholders to a much greater degree in monitoring and evaluating the effectiveness of the NDIS in meeting the needs of people who experience psychosocial disability. This engagement should include, at a minimum, an early warning system to identify and act on problems well before the formal evaluation of launch sites is complete. It will also require a robust process to identify the extent and nature of unmet needs, and the barriers to those needs being addressed.
The mental health sector stands ready to assist governments in realising the possibilities that the NDIS represents. The scheme has the potential to correct historic injustices and to meet Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities. However, mental health consumers, carers, along with service providers and non-government organisations must be at the centre of the Scheme’s development if it is to meet community expectations.
We must all acknowledge that implementing such a major initiative will take many years, and that all stakeholders are working hard to make the NDIS a reality. However, implementing a scheme without first getting the fundamental design features right may lock in a set of practices and principles that will not benefit the majority of people with serious psychosocial disability relating to mental illness. Worse, it may put some extremely vulnerable people at serious risk.
By offering governments our assistance in good faith, we hope to work together with them and the sector to ensure that people receive care and support appropriate to their needs, regardless of their path through the many systems (NDIS or otherwise) that someone with a mental illness may encounter over a lifetime. Together, we can help build a scheme that meets this worthy goal.
 Tier 1 which covers the functions of the NDIS which relate to all Australians such building awareness of disability issues and promoting social inclusion.
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