Am I Not Essential?

By Jessica Revens and VMIAC’s CRG Group

*Names changed

The disruption of NDIS essential services caused by COVID-19 is making many of us feel non-essential in the eyes of our government.

There is no denying that the COVID-19 Pandemic is making life more difficult. From social distancing to lack of toilet paper the world has been turned upside down. People everywhere are talking about ways to look after our mental health throughout the crisis. But what is not being spoken about is the impact of COVID-19 on the mental health supports in place for people with psychosocial disability.

I, for one, only recently became a participant on the NDIS. With a planning meeting on February 20th I was nervous but the world was my oyster. After getting advice from those who have come before me and assembling my superhero planning crew I received my plan. And I tell you I was shocked. Amazed, even. I had received everything I asked for. Very few can say that of the NDIS. So I was excited to gain access to all that was promised to me… And then COVID-19 came along.

The NDIS process is slow at the best of times. By the time I could finally meet with my Support Coordinator they were self-isolating for suspected COVID-19. All of the community supports I was promised – someone to take me shopping, someone for cleaning, someone to help me cook, art therapy, someone to go hiking with – all of this seemed to slip through my fingers. As workers close up shop to stop the spread and so called non-essential businesses shut down the promises of the NDIS became a distant memory.
 
NDIS Participants are receiving a huge amount of conflicting messages. Some services are closing entirely. Some are going online. Some will do face-to-face but only for certain services. Some aren’t communicating at all. We are just trying to keep our heads above water but it feels like the water is getting deeper and deeper.

I spoke to VMIAC’s CRG about this problem and this is a seriously worrying trend. Steph, who lives in rural Victoria, told me that there is ‘cascade of cancelled appointments’. One CRG member Amy said ‘I haven’t seen a person in ten days. They’ve all left. It’s not very good.’ NDIS participants are feeling abandoned by the COVID-19 service disruption. And with confusion over whether our services are essential, we start to wonder how essential are we in the eyes of society?

Workers are cancelling their appointments with NDIS participants for a combination of reasons. For some, it might be policy, for some it might be about protecting the immunity of their family. Tina, another member of the CRG suggested that ‘they’re not looking at it from a consumer perspective, they’re looking at it from a provider perspective’. NDIS participants are being left high and dry to protect workers. But who is protecting our rights to often life-saving and life supporting services?

To an NDIS provider it may seem like their services are something people with psychosocial can live without. But it is often underestimated how important someone’s community access supports and capacity building supports can be in keeping someone well and on track to their goals. For instance, Ally, a CRG member said  ‘I don’t have any support workers right now so I’m just really worried that I’ll become unwell.’ Ally, like many others, is having her entire structures to support her health stripped away. This is causing huge amounts of stress. The NDIS is supposed to improve our lives, not make them harder. Never mind that the NDIS preaches choice and control and yet we are having our autonomy stripped away by the policies surrounding COVID-19.

Decisions are being made about us, without us. One way this is occurring is the move to online sessions. Quality of service is a huge issue as it is hard to believe that the same quality of service can be replicated online. And yet we are often expected to pay the same price from our plan? How can this be value for money? The trouble is, as Eloise defined it, that ‘some people are having okay experiences, some people are having really bad experiences’. Inconsistency is the root of the problem. Inconsistent messaging, inconsistent explanations and inconsistent results.

It is clear that the NDIA needs to make up their mind. And communicate that clearly. Much of the stress NDIS participants are feeling is from the inconsistent messaging and treatment. IF we could get some clear leadership from the NDIA about what is and is not regarded as essential and how COVID-19 will affect our plans and our experiences, participants would at least know what we are dealing with. And maybe we can grab our floaties and learn to float on our backs while the water crashes all around us. Because staying afloat in this difficult time is essential.