“Yet, here I am, grappling with the loss of income and the emotional toll of watching my daughter struggle. Personal sacrifices have been an inevitable part of my journey.”
Sara has three children. Her oldest is largely independent, and while her infant requires a lot in terms of basic needs, it’s her middle child (13) whose complex needs are higher. For this young teenager, navigating the transition from primary to intermediate school and then high school proved particularly challenging.
“Each milestone required a reduction in my working hours as I strived to meet her increasing needs.”
In 2022 Sara cut her work hours to 35 a week, then 30, then 25, until high school, when she made the difficult decision to leave work altogether.
The lack of understanding from teachers and the education system was a large factor in her decision. Teachers didn’t understand that her daughter’s coping mechanisms, such as sitting in a quiet part of the school grounds with her iPad, were necessary for her mental health. Instead, she was expected to follow rules and regulations that didn’t accommodate neurodiverse children.
Sara’s workplace tried to assist as much as they could, but she came to realise she couldn’t continue to juggle work and care.
“My career is done for now.”
When Sara resigned, she was at a stage where she could have commanded a high income and made significant contributions in her field of expertise. Despite this, she says it was the right decision to make.
“Family will always be more important.”
While hiring caregivers to look after her daughter while she is at work may appear a viable solution, and allow Sara to continue in paid employment, she says the reality is far from simple. Hiring caregivers from an agency proved distressing for her daughter.
“She needs people who have known her for a consistent amount of time, who understand her and with whom she’s built a relationship. My mum is one of the few people able to help, but we have the challenge of distance as we’re in Christchurch while mum lives in Nelson.”
“For us, Carer Support* hasn’t really been about getting physical care. What has proved beneficial is being able to provide activities, sensory support, and a safe environment tailored to my daughter’s needs.”
One on one swimming lessons is one of these activities. Although it takes an hour before lessons to prepare psychologically, her daughter loves them, and they also give Sara a half hour break.
Sara intuitively knew that her daughter was neurodiverse for a long time, however, seeking a diagnosis proved particularly difficult.
“She had a late diagnosis, so we’ve had to play catch-up. We were finally eligible for funding in September last year,” says Sara. “It brought much-needed support, allowing us to invest in essential resources like noise-cancelling headphones and specialised therapies such as a sleep psychologist. And when I needed a break, there was funding for a ticket to Nelson to see her grandma, which really helped.”
Sara’s daughter has improved sleep patterns from when she was younger but is still often awake at night for long periods. Sleep therapy is a goal that would assist her daughter and the whole family, she says.
The family are unsure whether this will be funded as rules about how Individualised Funding* and Carer Support can be used were recently changed.
“It would be helpful if needs assessors and Whaikaha (the government agency that administers disability funding) had more clear and specific guidelines around what can and can’t be purchased. It seems to vary according to who you talk to. Needs assessors have their own biases that skew what they feel is appropriate as well.”
She says changing the narrative around carers would also help in terms of perception.
“Many carers haven’t had a holiday or indeed a good night’s sleep for many years. This idea that we ‘choose’ not to work isn’t helpful. Individualised Funding is such a small price to pay in the general scheme of things. It’s far more expensive to put your child into a care facility.”
For Sara, the choices are stark – ‘I’m simply a full-time carer who can’t work in the role I was trained to do. My daughter is with me all the time and that is my life now.’
*Carer Support is a subsidy that provides modest funding to give full-time carers like Sara a break from their role (respite). It is the only wellbeing support most primary family carers receive. https://www.whaikaha.govt.nz/support-and-services/carer-support-and-respite/carer-support
*Individualised Funding allows disabled people to choose how their annual support funding is spent. https://www.whaikaha.govt.nz/assessments-and-funding/individualised-funding
