It’s a memorable image, and a powerful one: Dunedin mum Sandra Jones decked out in an orange fluoro suit holding a large sign reading “crime doesn't pay, caregiving doesn't either" in Dunedin’s Octagon. She was one of the battlers in the struggle for family carers to be paid - something which ultimately resulted in the Funded Family Care payment.
It’s a memorable image, and a powerful one: Dunedin mum Sandra Jones decked out in an orange fluoro suit holding a large sign reading “crime doesn't pay, caregiving doesn't either" in Dunedin’s Octagon. She was one of the battlers in the struggle for family carers to be paid - something which ultimately resulted in the Funded Family Care payment.
“I’m one of the originals. I’m not the originals that took it to court, but I did protest in the Octagon, which got good media response,” Sandra recalls.
“I donned this pair of orange overalls and sat in the Octagon for a morning with a big massive poster. Everybody said yes, but [then Health Minister] Tony Ryall said no. He went against everybody.”
It took 13 years of fighting for family carers to get Family Funded Care, with the Government’s hand ultimately forced by the courts. And yet, what has emerged has been an abject disappointment, she says. Designed to pay a minimum wage up to 40 hours a week, hundreds of carers were supposed to be eligible for the Government’s much-touted $92 million policy.
Yet Carers NZ believes only a few hundred have been able to access it. And there are frustrating limitations – like carer spouses being banned from accessing it, welfare benefits being cut, and the supported person with a disability needing to act as their parent's employer, when many do not have the capacity to comply with this requirement, she says.
Sandra is among those who have managed to jump through the hoops to be paid 22 hours a week for the lifetime role of assisting her 43-year-old daughter, Kerry.
“It’s only minimum wage, and you can’t work outside of it, and you’ve got to be available 24/7,” she says. “It’s a weird situation.”
Sandra’s amazed at the amount of people who have told her they have applied for Funded Family Care and not received it.
“I can’t understand that. I just think maybe I was a louder voice. When it first came out, I went to all the meetings. The then Minister of Health put on all these lush meals and tried to get our feedback, then never went with what any of us said,” she recalls.
“I thought it should be paid as an allowance once a year so it was untaxed - and you could get on with things and it wouldn’t affect your other work or your tax situation, or if you were on a benefit it wouldn’t affect that."
“Now it's here and why aren't more carers getting it? Government allocated millions - millions and millions - well, where’s it going? It’s certainly not all being paid to those it was meant for."
Sandra says she just feels very lucky to get her 22 hours a week.
“I’m entitled to four weeks’ holiday a year, which is kind of a joke,” she laughs. “I can’t go anywhere. I can’t just say well that’s it, bye Kevin [her husband], I’m off to Hawaii for four weeks! It doesn’t work that way.
“I’ve still got to be here for Kerry for showering and things. But he gets paid for four weeks, he’s my support, so if I get sick he can step in.”
Sandra says one of the biggest challenges of being a family carer is the lack of public understanding about just what it entails. That’s been brought home to her recently, with a family member being unwell.
“We have a situation where I’m going to have to go to a funeral because someone in our family’s dying and I can’t. It’s totally the other end of the island and I can’t, because of my daughter. It brought home how little understanding there is out there. People just assume that you can drop everything and carry on with your life and do all the things other people do.
“You’re isolated. You just carry on and carry on and people don’t have any idea. They just have their lives, going out and doing things. We don’t go out or go on holiday or go on trips, anything like that. Because as a carer, I can’t.”
Kerry participates in an adult education class three days a week and those hours are Sandra’s free time. Yet she’s spent much of that giving back to the community, including running a soup kitchen.
“I do a lot of community work when Kerry is away. If I need other time, my husband’s my support person. We don’t have anybody else other than him and I. We don’t have a support network outside of each other.”
The couple once had an amazing respite care worker, who Sandra says was exceptional and the only other person she has trusted with Kerry, but she’s moved on.
“I did advertise once for respite care workers and what came out of the woodwork just made me shut that idea right down,” she remarks.
Her son kindly offers to help, but she worries Kerry will fret if things aren’t in her normal routine.
Sandra struggles to ask for help from people outside the family because she’s seen too many “horrifics”.
“I find it very hard to trust others, probably because Kerry has limited communication. I suppose it’s overprotectiveness, but I watch when she’s trying to tell somebody something and it’s like a deaf person - you know how people can talk above them or around them. Like you’re making a cup of tea and instead of asking her direct if she’d like a cup of tea or coffee, they search for somebody else to ask ‘do you think she would?’ and it’s like she’s not a visible person.
“And so I get very protective about people coming in. I must read Facebook too much because I see horror stories. They only show the bad stuff on there,” she laughs.
Sandra speaks to many women carers whose loved ones are in the same education class as Kerry, including solo mums coping on their own. They ask her for advice about how she managed to get Funded Family Care, how they can access respite care – many tell her they just don’t have anybody who can provide it.
She says various organisations’ buddy schemes are working well - Kerry is picked up twice a week thanks to the Community Care Trust to go shopping, visit the cats at the SPCA, or go swimming or to the gym.
“But those are just peer things. We don’t have anybody. I notice that with a lot of the parents, they don’t have anybody that can actually come into the home that can be trusted, so that we can go away for the weekend and things like that. We only have, I think, one respite house here, and that’s a friend of ours who just opened it last year."
“But I think a lot of us get isolated because our kids don’t want to stay away from home. Kerry won’t. She won’t sleep anywhere but in her own bed. Which makes it hard. There are a lot of women who, I think, we’re all in the same shoes."
But Sandra finds great joy in her closeness with Kerry.
“She’s very loving and caring. I feel she’s safer here. I feel good as her mother and I feel this is my job. She’s my best friend.”