Appeal against carer payments a blow for families

22 January 2010 – for immediate release

Appeal against carer payments a blow for families. Case highlights serious problems in public sector decision-making.

Crown Law has announced an appeal against the recent ruling from the Human Rights Review Tribunal decision about payments to families for care of their disabled adult children.

The tribunal found the Ministry of Health had unlawfully discriminated on the basis of family status, and that family carers should be paid for the care they provide, in circumstances where the government would otherwise have to pay for that care.

The decision to appeal is a serious blow to the interests of carers and the disabled people they support, said John Forman, Executive Director of the New Zealand Organisation for Rare Disorders, and Chair of the New Zealand Carers Alliance.

Significant discrimination will continues for Carers despite the government’s Carers Strategy aiming to improve supports for carers, and despite changes to Human Rights legislation binding the government back about 10 years ago.

During the development of the Carers Strategy, work on payments to carers was put on hold pending this Tribunal decision, with the clear expectation it would provide guidance on the way forward. The appeal is a betrayal of that commitment.

For several decades policy decisions on these payment issues have been made simply by Disability Support Services officials on their own – without endorsement by Cabinet or even Ministers. In the context of NZ’s human rights laws, and proper accountability in the public sector, this is a very dubious legal basis for what they have done. In addition they have not had carer and community support for their claimed approach to the "social contract" by which they decided to exclude payments to carers.

The case raises a bigger question about the ethics of decision making in the public sector. For 25 years there has been very strong emphasis on budget management. This is important but has at times had too much weight relative to ethical obligations and human rights.

It is significant that government agencies has been taken to task by courts on several occasions in recent times, where the balance of ethics, rights and money management has got out of kilter. Examples are ACC and payments to families, and Work & Income and criteria for special benefit payments. Within the health sector the Health & Disability Commissioner has also found officials in breach of consumer rights and ethical duties relating to HIV screening and care for complex rare disorders. There are continuing problems with Pharmac not getting the balance right about funding of medicines, and schools contravening disabled students' right of access to education.

These examples highlight the need for an urgent examination of the way in which ethics and rights are factored into public sector decision making. Things are too heavily weighted to fiscal priorities. The State Services Commission should immediately and carefully examine this dilemma, quite independently of the case which is now being appealed.

In the meantime it seems the courts might be our only source of good judgement on the appropriate balance of ethics, rights and money management in the public sector. We may need to become more litigious unless there is a serious redressing of the imbalance.

New Zealand Organisation for Rare Disorders www.nzord.org.nz

Chair, New Zealand Carers Alliance http://www.carers.net.nz/carer_community/nz_carers_alliance

ENDS

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