In 2017 we brought home to Gladstone our second child, a daughter who had been born with a complex undiagnosed genetic condition, otherwise known as a syndrome without a name (SWAN). While there was so little the doctors could tell us, one thing we knew was that our daughter had a life limiting condition that had flung us deep into the world of disability and support. As we struggled to re-build our family and make sense of our beautiful girl’s complex condition, we came to realise that while we were well supported in some ways, there were some glaring omissions in the support our family truly needed. Six months after arriving home, our first National Disability Insurance Scheme (NDIS) package was approved, with the promise of the support our daughter needed to grow and develop to the best of her potential. After four months of trying to put our NDIS package to good use, we were still unable to find a support service willing to engage with our daughter. We were told that her artificial airway (tracheostomy) was too complex to manage, that insurances would not cover the risk, that staff could not be trained to care for a child so medically complex; in other cases, we were told nothing as our calls and e-mails went unanswered. This is when we realised that what we needed may not be out there for us, and if we wanted that to change, we would have to do something about it. Using my background in business, and Ellie’s experience as a teacher, we first set up a micro-company for the purpose of training and employing support staff for our daughter. It wasn’t enough for us to engage ‘independent contractors’; we needed people who were in it for the long haul, who we could trust with our daughter’s life and who would be personally invested in her long-term growth and development. Having the right support has meant that Ellie has been able to return to her work as a teacher, our daughter is kicking goals and our family as a whole is not only surviving but thriving. We know through lived experience the difference that quality support can make in the life of someone living with disability, as well as their family. We understand that those in our community living with disability have the same rights to living a full and meaningful life as anyone else. We all deserve the opportunity to learn and grow, as well as participate and contribute in our local communities. We all deserve to belong. Building on our original business model with our own daughter at its heart, we have expanded into Lionheart Inclusion and Training Services. Our business name is Lionheart because fierce advocacy is at the heart of everything we do. Those living with disability know that the life they deserve – the community, the purpose, the belonging – does not come on a silver platter. It is something that has to be fought for with fearless passion. We emphasise inclusion because this is the right of every person we work with, and an inclusive world is what we dream of for our daughter. Our team of highly qualified inclusion support staff know that a full and meaningful life looks like many different things to many different people. We take a collaborative approach to understand the barriers that exist in each of our client’s unique circumstances. It is through this understanding that we tailor our support to best meet the needs of each individual, creating the inclusion and belonging that we all deserve.
