Everyone knows the teenage years can be hard to navigate but, for Matthew, who works for the Department of Human Services in Tweed Heads, caring for a disabled teenage child had its own unique challenges.
For many years he cared for his teenage daughter Alicia, who is profoundly disabled with Prader-Willi Syndrome (PWS), while also caring for his son Michael who has an intellectual disability.
“Prader-Willi Syndrome is a genetic condition affecting many parts of the body, causing weak muscle tone, feeding difficulties and delayed development,” Matthew said.
“Many children with this condition suffer an insatiable appetite and struggle with obesity.
“Alicia’s behaviour can be very difficult to manage at times and it can put her own health and safety and that of others at risk.
“Making sure all of our kids get the time and attention they need can be a real balancing act. We love our kids and do our very best to juggle the responsibilities we have on our plate.
This week is Carers Week, raising awareness of the great work over 2.6 million unpaid Australian carers do every day.
For Matthew, taking on full-time work as well as caring responsibilities was a huge challenge, but he said he was able to overcome workplace barriers thanks to the department’s flexibility.
“I can’t thank the department enough, particularly my managers, for accommodating my work/life balance,” he said.
“My wife had study and work commitments, so I was offered part-time work to compensate for the time she needed to be away from home.
“I know I work for a great department. Their commitment to making sure I had access to various options made my life as a carer a little easier.”
Alicia now lives in a group home. Although this decision was very difficult, it was necessary for her own wellbeing and the wellbeing of their family.
Since being in the group home, Alicia has moved forward in leaps and bounds.
“We regularly spend time together as a family, and the transformation has been incredible. She is so affectionate with everyone in and out of her circle.”
More information
If you know someone who is caring for a person with a disability, medical condition or who is frail aged, they can contact the Department of Human Services to find out what payments and services are available to support them in their caring role.
For more information, go to: humanservices.gov.au/carers
