Kirsty and her 11-year-old daughter, Isla, both live with disability and are carers for each other. Kirsty says that the support they have received from Carer Gateway has been invaluable.
Kirsty and her daughter Isla both live with disability. Kirsty has chronic PTSD and Ehlers-Danlos Syndromes (EDS), and Isla is autistic.
EDS are a group of 13 rare, inherited genetic disorders that weaken connective tissues and often comes with chronic pain and fatigue. There is no cure, so the focus is on symptom management.
For Kirsty, living with EDS means she sometimes needs to spend time – often weeks on end – in hospital. She can no longer drive and has recently needed a wheelchair.
Carer Gateway has helped with the wheelchair, and with transport. It has also facilitated community connection through online peer support, where carers can get together online and do activities like crafting together while they chat. Kirsty and Isla have also enjoyed attending family days organised by Carer Gateway, and Kirsty has had some counselling.
“The counselling helped me to develop a carer-focused lens which has been really beneficial because it’s very easy to judge yourself and see your flaws as a parent. When you’re also a carer, it seems to be even more isolating,” says Kirsty.
“Being able to talk that over with someone with professional experience was reassuring because prior to that, I didn’t really have anyone to talk to who knew what it was like.”
Kirsty first connected with Carer Gateway in 2021, just after returning home to Australia from New Zealand, where she had lived for 20 years.
“I had to be hospitalised because of my chronic health issues. I had no family nearby and really needed to access some supports and a bit of community connection as well.”
Because Isla was a New Zealand citizen, she was not eligible for NDIS support. Kirsty was able to organise Australian citizenship but found the cost of the psychology services she needed to registrar herself and Isla with the NDIS prohibitive.
Carer Gateway arranged the psychological support Kirsty and Isla needed to be able to complete their NDIS assessments and helped to manage the administrative load of registration and creating NDIS plans.
“When we couldn’t access any supports, we were completely drowning. Carer Gateway stepped in and helped a lot. It was just invaluable. I would’ve been completely stuck without them.”
When Isla’s disability meant she needed to homeschool, Carer Gateway helped to organise school equipment for her.
As a young carer registered with Carer Gateway, Isla also receives support tailored to her personal experience of providing unpaid care to a family member. This included a referral to Little Dreamers, an organisation that supports young carers.
“Isla is an informal support carer to me. She does a lot to help me out with my disabilities. Through Little Dreamers, she had tutoring for a term. She’s participated in online peer support groups, which have been amazing, and sent her some resources too. They also invited us to a carer’s day party, which was lots of fun.”
Whether you care for a family member or friend every day or just a few hours a week, you’re not alone. Carer Gateway offers free emotional, practical, and mental health support to help you. Call 1800 422 727 (Monday-Friday 8am-5pm) or visit our Carer Support page to find out more.
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