“Ethan, 21 years old, is a keen ABBA fan, loves all things trains and recently registered for the Melbourne Special Olympics Soccer and Ten Pin Bowling clubs.”
Brother of Sarah Kerr, Head of Inclusion, Sustainability & Engagement, Ethan also lives with a rare genetic syndrome called PACS1.
“To our knowledge, there are under 200 people diagnosed in the world with PACS1, and Ethan was only the 6th in Australia to be diagnosed.”
It wasn’t until Ethan was 19 that he received a formal diagnosis. Up until then, Sarah and her family were just living with the knowledge that he had an array of intellectual and physical disabilities, which meant that he would be unlikely to live independently and would require care throughout his adult life.
As Sarah’s mum is a single parent, Sarah is responsible for supporting Ethan’s care when her mum is unable to and is aware that in the long term, she’ll be responsible for Ethan’s day-to-day.
“Recently, my mum spent three weeks in hospital, which meant lots of coordinating carers and activities for Ethan to ensure he was well looked after while she recovered. My husband and I know that when mum is no longer able to care for my brother, his ongoing care will be our responsibility.”
Being a carer has been a part of Sarah’s identity and has been since she was 10 years old. Although her daily life isn’t particularly impacted by her caring responsibilities, she not only sees it as an opportunity to positively contribute to the lives of people with disabilities but to also connect with other carers and provide them with support as they embark on their own journeys.
“I hope that being a carer doesn’t have to feel isolating. There are so many support services that are available and other people like me who have been through similar experiences.”
For Sarah, the challenge of her role as Ethan’s carer mainly comes from the mental load. Balancing work and her young family is more than enough to manage on the daily so the additional layer of her caring responsibilities can be tough. Despite this, the positive impact this journey has had on her far outweighs the challenges.
“Having Ethan, and other people with disabilities, in my life has made me a better person. I’m more compassionate, open minded and patient. I’m constantly learning from him and am committed to being an advocate for him and others.”
The support Medibank has provided Sarah hasn’t gone unnoticed, in fact, she’s uses this support and her own personal experience to pay it forward.
“The flexibility in being able to manage my work around Ethan without using my annual leave has really taken the pressure off. Knowing that I have the flexibility means that I feel less pressure to juggle ten things at once. I’m so glad to be a part of the work we’re doing at Medibank to support our employees with caring responsibilities. I hope that others really benefit from the tools, resources and support that we’re building.”