Place Categories: Carers, Disability Care, and Professional ServicesPlace Tags: disabilitycare, disbilitycare, and lionheart
Lionheart Inclusion, Training & Support Services specialise in Support for NDIS participants, Training for those in the Disability Support sector and Inclusion for Schools and Companies.
Lionheart’s Beginnings
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.
A Change Was Needed
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.
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