Carer groups are calling for the appointment of a commissioner specifically focused on the rights of those who care for others.
A woman caring for her immobile husband says she’s had about three weeks off in the past six years.
“I am exhausted," Maxine Hall says. "The daily grind of laundry, making sure my husband eats properly, attends his medical and dental appointments and attempting to keep him from descending into the dep depression which saw him hospitalised several years ago, wears on me.
“Added to this, I have my own significant health problems.” READ MORE: * Alzheimers NZ calls for urgent cash injection * Parents of disabled children take fight to Court of Appeal
The 73-year-old cares full-time for her husband David who has secondary progressive MS and is in a wheelchair.
The couple qualifies for half an hour of free care each week and has someone visit three times a week to shower David.
“How long can I keep doing this? How long must I keep doing this? I am entitled to respite leave, but where?"
Family carers want a permanent advocate in government, alongside legislation to improve financial and respite support for those looking after their frail, unwell and disabled family members.
They say despite a carers strategy being developed in 2008, little has changed to improve the lives of those doing hard and often thankless work.
Infometrics analysis based off data from the 2018 Census estimated there were 432,000 unpaid carers in New Zealand – one in seven adults, but that this was likely an undercount.
Carers NZ said it was probably double that.
Infometrics found the annual economic contribution of unpaid caring was $17.6 billion or 5.4 percent of GDP.
“The reality is that without unpaid carers, the already overburdened health system would not be able to cope with the extra demand for its services.
“To put this in context, there are 7.9 unpaid carers for every practicing nurse, and 9.6 unpaid carers for every personal care assistant or aged and disability sector carer,” the report from November 2022 said.
“It's time to stop looking at the low hanging fruit, a little brochure, or a little initiative here and there and we have to look at the big things." – Laurie Hilsgen, Carers Alliance
The report also found unpaid caring fell disproportionately on women and that carers suffered as a result.
“Unpaid carers make sacrifices. In addition to the day to day costs of caring such as food, fuel and other expenses, the time unpaid carers spend caring is time they are unable to spend at work, studying, at leisure, or looking after their own health.
“Reduced ability to work results in lost earnings and lost Kiwisaver contributions. Furthermore, the broader effects of lost leisure and respite result in a loss of wellbeing.”
Estimates are that about $1.5 billion in income each year was lost to people who were undertaking the unpaid care work instead.
The report gave the example of a carer who worked 30 hours a week instead of 40 between the ages of 35 and 65.
“This carer sacrifices $896,000 in lost revenue during the time that she is working part-time. This comprises $888,000 in lost gross earnings and $8,000 in lost employer Kiwisaver contributions; $284,000 is also lost to the Government in tax revenue.”
Carers Alliance secretariat Laurie Hilgsen said advocacy groups had worked with the government for years, coming together in 2008 to develop a strategy, but it had dragged its heels since then.
“And here we are in 2023 still scratching our heads about why we haven't been able to fix those big things like respite so carers can have a break and stay well and why we haven't been able to achieve a fair payment system for carers.
“Why are we still having to fight these battles when the value of carers work is documented? There’s evidence for it,” she said.
She said NGOs were the ambulance at the bottom of the cliff and systemic change was needed.
“It's time to stop looking at the low hanging fruit, a little brochure, or a little initiative here and there and we have to look at the big things.
“We have to look at respite, we have to look at payment for carers, we have to make sure the system works well for carers so they can keep caring because that is in the country's best economic interests and it's also the right thing to do.”
The Supported Living Payment for family carers is $384.92 per week for those eligible. For 24/7 carers, that equates to $2.29 per hour.
Family carers are allocated a maximum of 14 days annually at a rate of $75 per day for respite care to let them have a break from caring – yet finding somewhere with space avalible is difficult and often there are waitlists.
The Carers Alliance is now calling for a Minister or Commissioner for carers so their needs can be recognised and acted on.
"They aren't a priority population in their own right, they're an afterthought and that's why we have not achieved enough progress for carers in New Zealand, so it does need its own lens.”
Minister for Disability Issues Priyanca Radhakrishnan agreed there was more work that needed to be done.
“There has been movement in terms of respite, both in short-term funding and in Budget 23. But also looking at long-term, what does flexibility and respite care look like as well?
“So I'd say that there is work underway, I'm open to conversations to look at what further work can be done in that space. I do think it's an important area.”
But she was unconvinced a separate Minister or Commissioner was the answer.
“I think there are avenues currently where we can better look at valuing carers better and that's what I would look at first.”
A petition gathering signatures calling for action would be presented to Parliament next month.
