Editorial: A case which needs more discussion

Opinion

A decision issued last week by the Human Rights Review Tribunal deserves more discussion than it may receive in the middle of a summer recess. The tribunal has found the Ministry of Health to be unfairly discriminating against family members who look after a disabled spouse or adult child when it refuses to pay them as it would if they were unrelated caregivers.

The case, brought by eight families, raises questions that go to the heart of our social values. Are people entitled to be paid for the necessary care they provide for an incapacitated loved one? Official policy has long held that this care could be expected of families and carried no entitlement to a claim on the taxpayer. In refusing the claims the Ministry of Health has invoked an "implied social contract" that family members will provide "natural support" to the extent they are able, and that the state will provide for needs that family members cannot or will not meet.

The tribunal doubts there is any such implied contract in New Zealand, or not one that is sufficiently important to justify discrimination against caregivers who happen to be living with the disabled person. It also rejects the notion that the care of a moderately or severely disabled adult is "natural support" that can be reasonably expected within a family.

Yet the tribunal would surely be the last to call such support unnatural. Those who provide lifelong care for adult children with moderate or severe disabilities exemplify the parental bond. Their unconditional commitment is above issues of payment and entitlement. If they were fairly paid for all the hours they give, all the personal needs they meet, the stresses they face and the patience they possess, the cost to the public purse could be frightening.

But they appear to be asking for no more than contracted caregivers are paid. The pay might enable more such parents or spouses to give up outside employment and provide the care their loved one is receiving from an unrelated helper at public expense. In those cases there would be no additional cost to the public.

It is a pity the issue has been brought to the Human Rights Commission where it must be decided on principles of rights and entitlements rather than needs and equity. A principle that parents and spouses are entitled to public payment for the services they provide to adult children or partners is one that rightly troubles governments. Labour resisted this claim and National's Health Minister says the tribunal's decision will probably be taken to an appeal. He sees implications that go far beyond disability services.

The tribunal cites family support programmes as precedents for payments to parents, but in principle these are based on need. They depend on family size and household income. Not all families qualify. Accident compensation support for family caregivers is also not automatic. It is paid when needed.

If parents and spouses of the congenitally disabled are to qualify for benefits on the same basis as those whose partners or dependants are injured - and they should qualify - it is because their loved one needs full-time care and they are willing and able to provide it.

Introducing a payment to the caring relationship carries one risk that the human rights tribunal appears not to recognise. It is possible a family member who is not truly willing and able to provide the care will do so for the payment. The Health Ministry would have to assess and monitor family carers closely. Is this desirable? And should inspectors find the disabled person being neglected, can they transfer the contract against the family's wish?

This claim requires consideration from more points of view than human rights.