As carers, there is a lot on our plate. Every day needs to be scheduled, systems need to be in place, structure created to ensure ease and flow for those we care for. I often feel as though the day-to-day involves pre-empting a potential problem, in which a sixth sense develops allowing you to anticipate the needs of the person you’re caring for, and yet, somehow, every day a new challenge or disruption occurs that must now be accounted for. All this time spent on edge can be draining, which is why support services are so vital for the wellbeing of carers, however, sometimes managing services and support workers can be more of a challenge than a support …
Let’s take a few steps back and start with the process of funding this support. The NDIS is a system setup to create accessible solutions to challenges in the lives of those living with disabilities. On the outside this seems like a wonderful system, however, the reality is, unless you have policy literacy, access to working tech, and high functioning communication skills this “service” is hard to navigate. In my experience, the workings of the NDIS have brought the strongest people I know to their knees.
From a lack of internal organisational flow to a general misunderstanding of an individual’s disability, my experience has been that the NDIS does not serve the disabled community as smoothly as hoped. My biggest concern with this system is the fact that when the time comes – after you have collated all documentation, conversed with the right professionals, submitted all the appropriate tests (this process is tedious and frustrating) – it all comes down to one individual to decide what it is you need to support your loved one, or yourself. This individual, nine times out of ten, does not have an in-depth awareness of your disability and it seems as if the amount of support you’re granted in a review can be dependent on their mood, or their personal beliefs of how much funding or help you need. This is problematic, as it can determine how much freedom you deserve as a carer around your own personal life or work and determines the potential independence and ease of living possible for the person you care for. The process is not streamlined and there needs to be more sensitivity training for these individuals dolling out such crucial funds to people who really need them, as well as more overall training around the disabilities they’re advising on.
Once you’ve fought tooth and nail to get the funding you deserve, then comes the arduous task of finding support services that align with the budgetary allowances you’ve been given. In some cases, the support services are just not available in your community, or there are services that just do not meet the standard of care you need. I’m lucky that we have found a support work company that provides a high level of care and treats my father as a human being, however, this doesn’t mean that there aren’t teething issues.
The organising and managing of support workers can feel like a full-time job, managing an operating team of many individuals. My experience has been that you need to shuffle your respite needs around the schedules of support workers, constantly remind workers of the intricate details of your loved one, find creative solutions when there is difficulty with availability, and accommodate last-minute changes. I feel this from both ends as an informal carer and as a disability support worker.
From a carer’s perspective it is frustrating and difficult to manage this team of people, adding to your workload rather than reducing it. From a support worker’s perspective, it is also difficult, as you want to support the carer, however, there needs to be professional boundaries.
So, how do we mitigate the stress within these relationships?
Where to from here?
Firstly, I think these relationships could be improved by the provision of more formal, government funded training for those involved in the support world. My experience as a support worker is driven by my life experience as a carer and I feel my capacity to anticipate my client’s needs has come from learning how to anticipate my father’s needs. Secondly, I think there should be a conduit between the carer and support company who takes the organisational elements off your plate as a carer. They would shuffle the pieces of the puzzle to find the right fit for both parties and ensure the professionals have the correct information and training to succeed in their support. Rather than a carer seeking out their own support services and managing their own support team, what if someone did this for them, held the standards, created the schedule, and took one thing off the already very full plate of the carer?
I know some carers feel a sense of control in a self-managed plan and I recognise that this avenue can feel like an option that allows autonomy within care, however, what if there was a system in place that allowed for you as a carer to have a positive relationship with your support teams, that did not involve managing the day-to-day. If structures that worked were in place, carers would have time to share more positive experiences with both their loved one and the team that is with them when they aren’t. Putting the responsibilities of the formalities in someone else’s hands means your relationship could thrive from the perspective of creating the most enjoyable daily experience for those you care for.
Adding anything extra to a carer’s plate causes strain to our mental health and I think we can get so caught up in the narrative that if we want something done, we must do it ourselves, and this can be to our own detriment. A trustworthy system could prevent this mentality from developing. If the back end of support services was well organised and understanding of people's needs, there would be no need for self-managed plans.
If you or someone you are with is in immediate danger, please call 000. If you feel upset or are in distress, you can contact Lifeline, 24 hours a day, 7 days a week by phoning 13 11 14 or texting 0477 13 11 14.