Is the NDIS failing people with complex behaviour support needs?

There are countless ways to measure the success of the NDIS. The NDIA frequently focuses on satisfaction rates- the number of people who report having a 'good' or 'very good' experience of the Scheme (84% at last count). Another way is the often-touted notion of "Scheme sustainability,” the most vital indicator for anxious politicians as they scan over the latest "blowout" article in the right-wing press. There is no denying that both these approaches have significant value. Yet it is equally important to look at how the Scheme is servicing the most vulnerable people within the disability community.  These are the people who got the worst deal under the old system and hold out the least hope for the new one. They will be the hardest but most critical people for the NDIS to reach.

People with complex behavioral support needs fit within this group. If you are a participant who is reliant on behavioral supports, it is often hard to find service providers that meet your needs. Yet appropriate support can be essential to your safety and wellbeing.

In numerous ways, the Scheme is not designed to serve the needs of people with complex behavioral support needs. Providers and staff take on significantly more risk when engaging with a customer who may run into the road seemingly without warning or who has the potential to become violent. Experienced staff will require additional training, supervision and more than the permitted 6 hours in shadow shifts to allow both parties to become familiar with each other. Moreover, they could well expect to be paid significantly above award rate.  It is no wonder that the extra $2.48 an hour currently offered in the Price Guide does not really cut it. The 10% complexity load recommended by the Independent Pricing Review will hopefully go somewhat further. However, for a small number of participants, even this is unlikely to be enough. Without services to work with them, participants may be forced into hospitals or, in the worst of cases, remand in prison. Currently, the NDIA has no Provider of Last Resort policy in place to protect individuals from this fate.

Any behaviour support practitioner will tell you that there are a multitude reasons that a person might act in a manner that is perceived as challenging or endangers their safety or the safety of others. In some cases, it may be a defence mechanism or a response to past life traumas. For others, it is a sign that something in their life is causing them deep distress. We all demonstrate behaviours that it would take us years of psychotherapy to account for. But for non-verbal communicators, it can be particularly difficult to explain behaviours that are baffling to others. Practitioners will often need to undertake a Functional Behavioral Assessment with the participant in order to determine the root cause. This process is lengthy and can take around 130 hours. Unless this is your first encounter with the NDIS, I hardly think I need to tell you how challenging it would be to get the Agency to fund that many hours of assessments. However, without an in-depth assessment, any money spent on short-term behaviour therapy is effectively wasted.

Once you have identified what is triggering the complex behaviours, the next hurdle is getting adequate funding to address the issue. This may involve interventions that are more far-reaching than what can reasonably be provided under the "Improved Relationships" line items, which focus on specialist intervention, staff training or social skill development. All these line items frame the person as the problem to be fixed or managed; when very often it is the situation they find themselves in that is causing the complex behaviours. A person may need new accommodation if their housing situation is contributing to their stress, or 2:1 support to allow them to go out in public. Justifying such expenses would require a mountain of quality and coordinated reports from psychologists, occupational therapists and other professionals. In other words, you are going to have a fight on your hands.

There is some hope that the proposed new Pathway for People with Complex Needs will go part of the way to addressing the problems outlined. Though we still do not know exactly what the new Pathway will look like, early thoughts published by the NDIA include measures such as having specialist Agency planners leading the planning process, increased support coordination, monitoring for market failure and involving people the participant trusts in the planning process. Hopefully, highly skilled support coordinators and planners will be able to ensure participants receive funding for the assessments and supports they need. However, while this may go some way to mitigating the risk of market failure, the risk is nevertheless still present. Without Provider of Last Resort arrangements in place, provided by either NDIA or State Governments, people with complex behavioral support needs cannot have any confidence that they will not end up homeless, in a hospital or in prison.

Without a doubt, adequately supporting individuals with complex behaviour support needs is expensive. However, the cost of doing nothing is also significant. If the NDIS fails a person, then the Health, Justice and other Departments will end up picking up the bill. Needless to say, this is unlikely to result in good outcomes for participants. The NDIS is founded on the principle that the lives of people with disabilities have value. This principle cannot just apply to people who are easy to support and work with. The NDIS we fought for is one that funds each person in accordance with their support needs, regardless of whether it is expensive or difficult. When we have a Scheme that works even in the most challenging of circumstances, that is how we will know we have an NDIS that is succeeding.