KEY POINTS:
Almost 20 years after writing Counting for Nothing in 1988, Marilyn Waring is still battling for women - and some men - who are still caring for others with no pay from the state.
There have been some "extraordinary changes" in these past 19 years, she writes in a new book, Managing Mayhem, published today to mark the 114th anniversary of women's suffrage.
The proportion of women aged 15 and over in paid work has risen from 50 per cent to 60 per cent since 1988, while the figure for men has gone up slightly from 70 per cent to 73 per cent.
Women's average ordinary-time pay rates have edged up marginally, from 81 per cent of the male average in 1989 to 86.6 per cent today.
But Waring says that in its rush to succeed on "male" terms - in the paid workforce - the feminist movement has lost its original focus on the need to lift the status of unpaid workers, the mostly female workforce which cooks, cleans and cares for people and is still ignored in our national accounts.
Waring, 55 next month, was elected to Parliament in 1975. She quit in 1984 and has since forged an academic career. Last year she moved from Massey University to Auckland University of Technology's Institute of Public Policy.
Managing Mayhem contains chapters by various authors on topics such as caring for family members with Alzheimer's and grandparents caring for their grandchildren.
Waring's own chapter focuses on parents, children and other relatives who care for disabled family members.
"Does this person have the right to health and safety in their working life?" she asks.
"Do they have the right to participate in the community like the rest of us?"
In a test case now before the Human Rights Review Tribunal, the Ministry of Health has argued that not paying such people on the same basis as outside carers is "justified discrimination".
But Waring writes: "The 'justified limitations' on the right to be free from discrimination were not supposed to extend to the servitude situations of the women and men who care for members of the family without recompense, 24 hours a day and seven days a week."
The situation is complex. Just over 4000 carers are paid a "domestic purposes benefit - care of sick or infirm", which is payable to anyone caring for an adult, other than a partner, who would otherwise need hospital care. For an adult carer with no children, that's currently $223 a week after tax.
If your family member happens to be disabled by an accident, you can also get paid by the Accident Compensation Corporation to provide care.
The ACC strongly recommends that its clients should use outside agencies for this care, "as we check that they provide high-quality, professional care". But if a client insists, it will pay a family member instead.
But if your family member is someone like Rotorua 43-year-old Sven Carter, whose lifelong autism and epilepsy have never been pinned down to an accident, yet who doesn't need to be in hospital, then the official policy is that he is a family responsibility and you cannot be paid to care for him.
If you placed him in 24-hour residential care with an outside agency such as Spectrum Care or Focus 2000, then the Ministry of Health would fund that agency at rates which, in 2005, ranged from $49 to $175 a day, depending on how disabled he is.
Alternatively, he could get an individualised funding package to employ people to care for him at home.
But the ministry refuses to allow such packages to pay for care by anyone who lives in the same home as the disabled person. In Sven Carter's case, that means his father Laurence, now 74, who has cared for Sven on his own for the past 28 years.
In response to a Human Rights Commission claim to the Human Rights Review Tribunal on behalf of the Carters and six other families with disabled adult children, the ministry says its policy does not exclude paying family members as such.
Bizarrely, it says its policy "would not prevent a non-custodial parent, who resided in a different house, from being employed to provide home-based support services to his or her child and the custodial parent".
But Laurence Carter, Sven's custodial parent, cannot be paid.
"Alternatively," the ministry says, "an individual may be employed by a Residential Support Services provider to provide care services to the residents of a residential home, one of whom may be a relative."
But if the individual chooses to provide the same care to the same family member at home, they get nothing.
The ministry says non-family providers such as Spectrum Care do not "mix disability support/personal care services with general parenting roles". They also "offer their services to a class or range of potential clients and do not wish to limit their services to one or two particular individuals on a permanent basis". Its policy, it argues, is a "justified" discrimination because of:
* "The role of the public health and disability support system as a 'back-up' or 'safety net' of services for disabled persons who, for whatever reason, do not wish to rely on their direct family members for fulltime caregiver assistance or services.
* "The detrimental consequences of mixing disability care services with parenting roles.
* "The role of the family unit in society.
* "The inability to, and inappropriateness of, monitor care [in families].
* "Supporting the independence of persons with disabilities.
* "The cost to Government; and
* "The ability to make exceptions where circumstances require."
This policy has some support from disabled people themselves. Disabled Persons Assembly policy manager Wendi Wicks says Waring's approach is "simplistic" and "more discussion needs to be had" before the policy is changed.
"We do have knowledge of some cases where the disabled family members are the means for the family to earn a living," she says.
Some elderly people would rather have paid professionals help with personal care because asking their children to do it would completely change the nature of their relationship.
In the chapter on Alzheimer's in Managing Mayhem, a woman caring for her husband says: "If I let myself think that this is my husband and that's the person I married I just crumble, so I think of myself now as the caregiver."
But Chief Human Rights Commissioner Rosslyn Noonan says disabled adults should have the right to choose to be cared for by family members if they want to.
The policy has been under review ever since an earlier Human Rights Act case where the parents of an intellectually disabled man, Tony Hill, were refused IHC funding to look after their son in 1999.
In that case, the Complaints Review Tribunal ordered the IHC to treat the Hills' application to be paid caregivers for their son on the same basis as an application from an outsider, and to stop discriminating against family members in all other cases in future.
This judgment has not yet been implemented because the IHC contracts for its funding with the Government and is still waiting for a clear policy.
"Until we get some clear direction from Government, we will continue to pay family members only in exceptional circumstances," says chief executive Ralph Jones. Only two families are paid at present.
In March 2005, the Government's Office for Disability Issues floated the possibility of an income-tested and means-tested payment to family carers on the lines of a family caregiver benefit paid to 80,000 families in Australia, at what was then A$238 ($281) a week.
An interdepartmental working party was set up to provide ministers with options by November 2006.
Noonan says the working party "came very, very close to a resolution, and then at the eleventh hour in a sense, the skids were pulled from under it on the basis that there is this case before the courts".
She says the issue remains a policy issue and ministers should not have shunted it off to the legal system.
"What appears to be very shameful is that the Crown is fighting this group of people instead of actually supporting them, and it's almost as if they are saying this is too hard so we won't be bothered," she says.
"This not an insurmountable issue, but it does get to the heart of whether our society recognises, values and supports caring work within the family.
"It doesn't mean it has to be all turned into the equivalent of wages and salaries. There is a range of options that could be put together.
"But the basic question is: is it fair that people in this situation should end up poor and unwell themselves because of the work they do - which if they were not doing, the state would have to do?"
