Tapu Misa: Time to start paying parents of disabled

I know there are parents who never want their children to leave home. I'm not one of them. As soon as they're able, I want my children to fly the nest.

This is not because I don't love them or the endearing way they leave their clothes on the floor and eat their way through the week's groceries in less than half that time.

No, I will tell them as I gently push them out the door, satisfied that I will have discharged my parental duties. It's because I love them that I want them to spread their wings and make their independent way in the world. This is what nature intended. It's called growing up.

Most of us would agree this is the natural order of things. But what happens when your children can't leave home because of their physical and mental disabilities? What's natural then? Do we think parental duty extends to the kind of round-the-clock care that most parents leave behind when their children outgrow kindy? Is it natural to still be wiping your child's bottom at 40?

The Ministry of Health seems to think so. Its idea of "natural family support" (which, therefore, ought not to be funded by the state) encompasses the kind of care that Thames parent Cliff Robinson, 73, has provided for more than 30 years for his two disabled children, now aged 38 and 41. Both have Microcephalic Intellectual Disability (one of them also has schizophrenia). They need constant supervision, and help with such basic needs as bathing and eating.

If Cliff had thrown his hands up and said looking after his children was too hard, as many others have done, the state would have paid someone else to look after them.

But because he kept his children at home, wanting to give them as normal a life as possible, because he didn't want his family split up, he's endured "a long, lonely journey".

Cliff was one of seven families who took a case to the Human Rights Review Tribunal saying the ministry was discriminating against them by not paying them to care for their disabled children, when it would have paid strangers to provide the same care.

The tribunal agreed with them in a decision this month - but last week the Government decided to appeal that decision.

If it delays long enough, Cliff and his friends will probably die from exhaustion.

Overseas research has shown that caregivers such as Cliff, who often parent alone, endure enormous stress and hardship. They're more likely to suffer a serious health problem, to die early, and to have significantly worse mental health and higher rates of depression than the general population.

It's no wonder, given "the relentless physical and emotional intensity of the caring role, exacerbated by financial hardship, a lack of respite and other supports, and the social isolation they experience".

Cliff has said he'd use the money to pay for respite care, so he can have a break.

No one disputes that caring for disabled children is extraordinarily difficult. But the Ministry of Health argued before the tribunal that families ought not to be paid to take care of their own because it would contravene an implicit "social contract".

Under that contract, according to a Cabinet paper, "there is an underlying, though not formally articulated, principle that people should not receive payment from the state to provide care for family members, including disabled family members, to whom they owe this 'familial duty"'.

Tough luck if you've drawn the short straw. And what was this "social contract" invoked by the ministry? Despite its reliance on it, the ministry wasn't able to clearly define its terms to the tribunal.

Nor could it explain why its existence hadn't prevented the ACC, which is responsible for people disabled by injury (as opposed to birth) from paying family members as caregivers.

Or why this so-called "social contract" hadn't stopped successive Governments giving financial aid (in the form of the family benefit, for example, and more recently tax credits) to families caring for children.

The tribunal concluded that while the "social contract in some form or another can be identified and may have importance for many purposes we are a long way short of being able to specify the actual ingredients of a social contract in New Zealand".

The Solicitor-General says the decision to appeal is in the public interest because of the potential fiscal impact of the tribunal's finding and its flow-on effect to other policy.

But the tribunal says the decision needn't have "open-ended fiscal implications". It questions the ministry's wide-ranging $17 million to $593 million estimate. "Our own intuitive view is that the impact is not likely to be great, within the disability sector."

There are several reasons for that. Payments would not be made to those who wouldn't otherwise have qualified for paid professional care. The Government could also ensure payments don't exceed what would be paid on average to hired carers in the absence of willing family members.

Frankly, not everyone has the energy or the inclination to emulate the example of Cliff and the other parents, even if you paid them.

It's worth noting that of the nearly 20,000 people getting paid support in 2007 for disabilities (not related to injury or ageing), exceptions to the non-payment policy were made for 272 people caring for family.

Which means someone had looked at their circumstances and decided their very real needs should supersede policy and some ill-defined "social contract". Someone had exercised common sense and compassion.

Before it embarks on another round of costly legal action, the Government should consider adopting the same approach. It can hide behind the so-called legal and fiscal implications, or it can do right by parents who badly need a break.