The National Disability Insurance Scheme in Australia and mental illness.
There really seems to be two trains of thought around medication and Bipolar Disorder. Those who think medication is a certainty, an absolute “Medication is crucial for managing bipolar disorder”, “Bipolar disorder is probably the main psychiatric disorder where medication is absolutely essential. I’ve had people ask me if there’s any way to do this without medicine. [My answer is] absolutely not.” 1 and the anti-medication and anti-psychiatry movement (and the points in between where the two movements meld). Head along to any anti-medication page on the web and you will read plenty of points as to why they are opposed to medication, with little focus on how to achieve better outcomes on the whole. The anti-medication movement seems set against medical ‘tools’ (in this instance, medication) that can assist in managing fluctuations and outright swings in moods. I found a handful of useful sites that propose ways in which to manage Dis-Order without medication who also were reasonable enough to recommend the use of medication if required to stabilise.
The more medicalised and psychology and psychiatry based sites reveal the opposite. Some suggesting that the Dis-Order in Bipolar is unmanageable without medication (see above quotes). As with most topics the two opposing arguments seemed ‘preachy’ and self-righteous and for myself personally, both were as hard to stomach as the other.
Unlike many other illnesses, it appears that when it comes to mental health and mental illness everyone has an opinion. Unlike other illnesses there appears to be a perception that the general populous is somehow entitled to have a point-of-view about our lived experience. “You should be on medication”, “psychiatry is a money-making and corrupt industry and you should be off medication”, “have you tried just controlling your moods better?”
On occasions I purposefully choose not to disclose my lived experience for want of not changing the dynamics of the conversation at hand. I get to hear both the good and the archaic opinions and perceptions in relation to mental illness. Working in an executive role within the field of mental illness/health I get to hear it all and while I recognise there have been great improvements, we still have some way to go. I sat in a meeting recently with some case managers/workers who were discussing a change coming through Australia at the moment – the National Disability Insurance Scheme2 (NDIS). In a nutshell the NDIS has the power to mobilise and enable people (such as myself) who have a mental illness to make their own choices around the services they receive to assist manage their illness. It’s an interesting time as the power balance between services/carers shifts towards the service user themselves. The rolling out of the NDIS seems to have (at least in my experience) heightened the entitlement to ‘have an opinion’ of those of us with a lived experience.
The NDIS means that people with a lived experience who have previously been (with all due respect to carers) disempowered to make their own decisions around their care and now being encouraged (at least by the NDIS) to-do so. This is creating a remarkable amount of Dis-Order within the system and the way in which we (again) talk about those with a mental illness. Here we have people who have been ‘unable’ to make their own care decisions for 10, 20 and 30+ years, who under the NDIS are suddenly able to make choices to achieve the best possible outcome for their health. There are murmurs in the mental health sector that service users are ‘struggling’ to make these choices and are thereby missing out on services they are entitled to (services now only get paid when a service user selects them over another service provider, so you can see how this can seem problematic for the service providers, while being great for people with lived experience in the long run). What service providers are forgetting is that a Dis-Ordered system has been created around us, one which disengages us from autonomy and self-control, a system, which has historically silenced our care choices and made decisions for us and on our behalf. Especially for those with more severe and persistent mental health issues, the new liberating and enabling system under the NDIS is a new narrative for many – What? I get a choice in my health care? Yes we do.
The NDIS has bought about the polarising opinions of many, of carers, of guardians and of service providers. Again, like with the medication debate, those WITHOUT the lived experience are expressing their point-of-view, speaking on behalf of people with a mental illness, albeit guised as concern for the individual (concern which may be genuine to an extent) and cloaked in a thin veil of caring. I say this because I am privy to these conversations without people knowing of my experience of Bipolar and when I dig a little deeper under people’s concerns for ‘us’, it becomes apparent that there is apprehension about the shift of power from services and carers to the service user themselves. Undoubtedly if a carer or a service provider were to read this, I’m sure to have caused offence and to be criticised as not understand their actual intentions. Fine.
The NDIS brings about a remarkable change and with this there is a throw-back to mental illness being something to have an opinion about, rather than a health issue that is best managed by the person with a lived experience themselves (and supported when need be). One of the largest risks I see in relation to mental health and NDIS narrative at the moment is that while the NDIS rolls out and embeds, the voices of those without a lived experience of mental illness will cause such a din that people with mental illness will be hard to hear. Having said this, the core principles of the NDIS are genuine empowerment – the choice and control of our own health care will sit squarely with us. While the NDIS still has some bumps in the road to navigate, it’s potential is revolutionary and where we have been silenced in the past, once we regain our voice and confidence in decision making, the future is resoundingly ours to take.