Nikita, 29, has Lennox-Gastaut syndrome, a severe form of epilepsy. She was born a healthy baby, but at 6 months of age she started having fits, and it gradually got worse until she was formally diagnosed with the rare syndrome at three years of age.
Nikita’s dad James, says intellectually she is like a 6-month-old baby, unable to talk or walk.
“We have to provide all of her care. We give her all her meals, change her because she’s incontinent, and she can’t walk anymore which is quite challenging.”
“So essentially we support her in every possible way, really,” James explains.
Living in Warracknabeal which is 350km north-west of Melbourne, Trish and James previously had to take Nikita to day programs at local disability institutions. James said it didn’t work for them, and Nikita didn’t enjoy going.
They wanted the freedom to choose who cared for Nikita and to have support workers come to their home, rather than take Nikita to them.
“It was important to us that Nikita was cared for in her own environment, rather than someone else’s” he explained.
Trish and James have had to make a lot of decisions based on Nikita’s happiness and wellbeing, and that is why they are in the process of building a purpose-built, accessible home that can comfortably accommodate Nikita and her round the clock support and ensure her safety.
They have been using Carer Solutions and their innovative Direct Employ service since it first began over 11 years ago.
“Carer Solutions meant that we could choose who worked for us, rather than have that decision made for us,” James said.
When sourcing support workers for Nikita, Trish says they look for women who have children of their own, nursing students, or trainee allied healthcare workers.
Their first port of call is to advertise on Facebook. That is how they found Kylie, who has been working with the family for over a year now.
They have also developed a relationship with a local university to recruit student nurses that would be interested in supporting Nikita, while also gaining on the job experience caring for someone with a complex disability.
Since partnering with Carer Solutions, Trish and James say it has given them so much more independence and freedom to have a life, which previously they did not have. They also have the autonomy to choose who comes into their home and when, to care for Nikita and her specific needs.
James says, “At the end of the day, our daughters care is number one and we need to just simply make sure we’ve got the right carers looking after her, and Carer Solutions provides that service.”