We are celebrating National Carers Week from 10 – 16 October when we pay tribute to those behind the scenes who provide care and support to some of the most vulnerable members of our community.
Almost 2.65 million Australians are carers for family members and friends who have a disability, mental health condition, chronic condition, terminal illness, an alcohol or other drug issue or who are aged and need care. As a registered NDIS provider, MacKillop’s Disability Support team works alongside carers to support children and young people with a disability and their families through tailored services that build confidence and encourage independence.
Jenny from the western suburbs of Melbourne is a sole carer for her three boys, who live with differing physical and intellectual issues as well as autism diagnoses. Jenny’s eldest boy, Kyle* was a sickly baby and Jenny knew something was wrong when he started having seizures and headaches. A scan eventually showed that Kyle had a brain tumour, which was operated on two years ago, just as Kyle was diagnosed with autism.
An exceptionally bright child, Kyle has excelled at school, despite not being able to attend for a lot of his childhood as his condition makes him sensitive to noise in addition to the seizures.
Jenny says the support Kyle receives from his NDIS plan makes all the difference to their day-to-day lives.
Because plans can be tailored to an individual child’s needs, we are able to arrange supports that work for Kyle. He loves facts and is particularly interested in English and science, so we have been able to support him with online tuition.
Jenny works with MacKillop’s Disability Services Team Leader, Su Mei Tan, who supported her to source tutors for Kyle.
“Kyle is very self-contained and does not easily interact with others, but when he is part of a structured session with tutors he knows and trusts, he is wholly engaged and it works really well for him. Su Mei has been very patient and she understands that Kyle does not always connect with people. We have been through some trials which did not work, but now we have found tutors who support Kyle to thrive and it is wonderful to see how happy and engaged he is.”
Jenny says that all three boys have different needs and it’s important that there is flexibility to accommodate varying disability supports.
“My youngest child, Adam* has an intellectual disability and exhibits opposition defiant behaviour which can result in noisy and boisterous activities which is challenging for the other two, especially when everyone was at home because of COVID-19 restrictions. I was concerned when teachers contacted me to let me know that my other two sons’ grades were dropping and realised it was because of the disruption and noise their brother was creating.
“Adam was also frustrated by being confined to the house and it works much better now that he is able to go to school. Su Mei helped to arrange art therapy lessons for Adam, which assisted enormously in keeping him calm and entertained. It’s a much more relaxed home environment now that everyone is able to pursue their individual interests,” laughs Jenny.
National Carers Week gives us the opportunity to applaud our carers, the backbone of community support. MacKillop’s Disability Services program is a key support to carers as we work together to assist children and young people with a disability access the services they need to live their best lives.
*Names changed and stock image used to protect privacy