Carers and Advocates Australia Pty Ltd (CANDA) was incorporated in 2018. It is an NDIS-registered company that directly supports people of all ages with disability. Our specialty is high-intensity care with complex needs.
Though we provide support coordination, it is generally supplied for and with our participants in a supported decision-making framework. We do things together intrinsically as a team, with a primary carer/team leader working dynamically with the support team and the participant as a part of that team leading the way and guiding their own decisions and pathways based on their needs, hopes, and aspirations for life. This way, we provide a cost-saving service that best serves the participant and team.
For specialised services, we can consult the right person who works with us, ensuring continuity and supervision of outcomes. The participant is the assisted supervisor, who determines how that service or outcome progresses.
We are currently developing our micro-economy model village. The goal was to keep us all out of the hospital. Because it never goes well for us, and recovery can often take longer than what we went into the hospital for, I knew we had to develop better skills, competency, and a team approach. Next, I wanted to free housing from private providers and place security and home first and foremost in participants’ hands. This is essential to feeling secure in life and having a home.
Then, I wanted to make sure that participants and support staff, as a team and individually voices, were heard. However, I tried to place participants in charge of their lives. To do that is more than an empty policy. It requires action. Having a seat at a table is one thing, but having power and ownership of it is quite another. So, I developed the concept of a working community with participants or residents who have ownership and leadership of a sociocracy or community council. Our disability representative organisation or council within the community.
I wanted to challenge the reality that we can only have the human rights we can afford. There is no magic pudding, as has been said. So, that ownership must come from economic power and our own steam. The current NDIS, as we know, is a bit hit-and-miss. So, the community would provide security, safeguarding and representation for our members. The current system isn’t financially tenable. It doesn’t work because we can only afford what we can, and it’s getting to the point where we may not have what we need. So, the community as an active working community is about safeguarding our future. We must make plans efficient and ensure people have what they need to be healthy and active. You can’t do much if you are stuck in bed. You can’t do much if your care is so bad you get sick or your disability develops in a harmful way because of wrong therapies, missing therapies, incorrect equipment, poor diet, infection, etc. You get my drift. Incompetency directly affects quality of life and longevity.
So, every community will have a core enterprise, a business run by us for us. Residents don’t have to work there; it will employ and benefit those outside the community. The profit goes back to serving the community.
In addition, we need to progress entrepreneurship in the community to support purpose, passion, and financial autonomy.
With a working village, we have working services beyond therapeutic. However, we also focus on providing crisis care. The only crisis care we have is a hospital tailgate warranty. For safeguarding in a system, we must have a viable crisis care offering for business continuity that isn’t institutionalised halfway houses.
We also need accessible medical clinics with services available that are disregarded or difficult for many of us. The difficulty in getting a pap smear, a bone scan, an x-ray, or just having a doctor who understands the complexities of your disability. Access to dentistry is highly variable, with very few dentists catering. Most people still think all access is a ramp. How wrong they are.
The specialisation of palliative care for people with a disability is also important to me, and this is something also in development.
A village is so much more than a developer’s dream of building a shit load of houses together. A town is a diverse community that socialises together but, more importantly, works together and has the means to make a change.
Our housing crisis has us screaming unheard as people everywhere struggle to secure the security of a home. However, what I have found has created the most damage: the loss of communities and the rise of dormitory towns. Community and social support have ensured our survival, and we have worked together.
This crisis is no different.
Our way forward is to move the goalposts and change the way and the business model for how social care works. We must have a secure home, safe and reliable care that can be taken for granted, access to the world in our way and self-determination in our lives that enables everyone to have a dream to aspire to.
We are a workforce failure, and support staff have been left out of the equation despite their competency and skills being incredibly needed. Recognising the extended scope of practice, many support staff undertake is just as important. It’s time to support them, give them a career pathway, and recognise how this role has developed into much more than bum wiping.
Our training program will train the human services staff of the future with competencies that are fit for purpose and reflect the reality of the role as it is today. Our competency-based training with an apprenticeship through our community will provide opportunities to join us, go out on your own, or become a part of our franchise with ongoing supervision and a framework that emulates our ethos and policies> Sending the next generation of support staff out there with the tools to facilitate good outcomes in a supervised and compassionate community.
The lack of support for such an essential part of care and safeguarding and ignoring the reality that your care and quality of care determine your health, and your outcomes staggers me. There is far too much extortion, potential human trafficking and exploitation by employers. There is a toxic, adversarial nature between participants and staff, and there is a fear from the government to acknowledge this as it will upset the apple cart by addressing the issue. It is important to note that many people with disability work in this area, me included. It’s very much time to promote a culture of positivity and dignity for all who make up those who have lived experience, who care for families, friends, and spouses, and for the support staff who work amongst them. It is not a new thing to speak of bullying in the healthcare sector, and it certainly exists and occasionally manifests as contempt in the disability sector.
As a community, we need to challenge the lack of expectation from society to the disability community and banish the curse of low expectations. It dramatically affects care because our expectations for another determine what we believe their quality of life is. The judgement, like that of a house plant, that the plant has water fertiliser and sunlight is no indication that the plant is thriving.
Culture in this space is essential because, in a sector with a lot of toxicity and lateral violence, it makes the possibility of community that much harder. Creating a positive space is truly an essential part of the community. Having more than a token board member and having a sociocratic council is critical to our success. It creates the space that we demand from others, one of respect, dignity, and encouragement without judgment or discrimination.
I hope that a community that represents itself based on more than lived experience, acknowledges its members’ different skills, and has representation through a democratic process will enable greater progress and safeguarding for all.
There are many issues as a community we need to advocate for, such as equality in health, access to secure housing, getting guardianship right and, more importantly than all, how to live beyond the rights we can afford and safeguard the best outcomes for people with a disability by providing ownership of their outcomes financially and socially. We must change the way social care is viewed forever and ensure, for generations to come, the best possibility of having the outcomes we desire. We can’t gain consistent outcomes for what seems like all the money in the world, and what we have is unsustainable.