Take Kylie Ramstadius, the primary carer for her 17-year-old son who has autism. Recently she has been devoting a huge amount of time to finding somewhere her son can do some useful work that he also enjoys.
Ramstadius's own full-time job, working in the disability sector, means she is more informed than most parents in her position about what is out there and how to go about getting the best possible outcome for her son. Even so, she gets very little support.
"First, I've struggled to find out what his interests are, what he could do and who would be willing to take him on. Until people have direct contact with someone with disabilities, they don't understand what's involved," Ramstadius says.
She tries to make sure her caring responsibilities don't impact on her work and admits she's lucky to have an employer who offers her flexibility and to work from home when she needs to.
"I hear about other carers working at organisations that have agreed before taking them on that they will be flexible, but then turn around and say that it doesn't work for them anymore. What is that carer supposed to do? Suddenly stop providing support?"
Employees who balance paid work with a caring role at home present a special challenge to employers, as the caring role is not predictable in the same way as mainstream childcare.
Hugh Bainbridge, a senior lecturer in the school of management at UNSW Business School, has been researching the availability, utilisation and perceived helpfulness of different, alternative work arrangements to understand what makes for carer-friendly employment.
"While there is a truck load of research on how parents with young children balance their work and caring roles, there is almost nothing on what other types of carers are doing," says Bainbridge.