Parents as caregivers’ case – background information

Ministry of Health v Atkinson & Ors

Background

Nine people have claimed in the courts that a Ministry of Health policy excluded them unlawfully from payment for the provision of disability care services to their disabled adult children that they would otherwise be entitled to.

Following a hearing held in September 2008, the Human Rights Review Tribunal found in January 2010 that the nine people were discriminated against by reason of their family status because of the Ministry of Health policy.

Seven of the plaintiffs are the family of disabled people. The other two were adult disabled people who wished to live with a parent and have that parent provide them with the necessary support services. The decision only applies to adult disabled people cared for by family, however the policy also relates to disability support services provided to spouses and other resident family members.

The Ministry of Health appeal on the decision to the High Court was dismissed in September 2010. The Ministry of Health then chose to take the appeal to the Court of Appeal where there was a hearing in February 2012. The Ministry of Health’s appeal was dismissed in a decision released 14 May, 2012.

Q: What is the plaintiffs’ claim in brief?

A: The plaintiffs are either family with adult disabled members or adults with disabilities. The disabled adults have been assessed by the Ministry of Health as requiring support services. These range from feeding, cleaning and toileting to help to run their home. However the ministry policy says only caregivers who are not family members can be paid to provide these services. Under the Human Rights Act it is unlawful to discriminate against someone because of their status as a family member. The plaintiffs are claiming the ministry has discriminated against them because it will not pay for the specialised care the disabled adults would otherwise be entitled to.

Q: What is the Ministry of Health’s argument in brief?

A: The Ministry of Health has argued that its policy does not amount to family status discrimination and that even if it was discriminatory, it could be justified because family members were expected to provide the care as “natural support” and part of a social contract. The Ministry also indicated the case had serious cost implications for the health budget.

The High Court upheld the Tribunal’s decision that this was not so. However until the case is finally resolved there will be no immediate change in practice.

Q: Who is representing the parents and adult children who are plaintiffs in the claim commonly known as the parents as caregivers case?

A: The plaintiffs have been represented by lawyers working for the Office of Human Rights Proceedings. The Office is an independent arm of the Human Rights Commission that provides legal representation for important cases under the Human Rights Act and the Privacy Act.

Q: Why is the Human Rights Commission involved?

A: The Commission is interested because the the Human Rights Review Tribunal has made a declaration of inconsistency under Part 1A of the Human Rights Act. Part 1A says that if a Government policy or practice is found to be inconsistent with the right to be free from discrimination as affirmed in the New Zealand Bill of Right Act, then this is a breach of the Human Rights Act.

The Commission appeared as an intervenor in the Court of Appeal hearing because the decision by the court is likely to have an impact on the Commission’s responsibilities under the Human Rights Act, in particular its ability to promote the rights of persons with disabilities.

Q: How much will it cost if the plaintiffs win their case?

A: At present the Ministry of Health spends about $840 million a year on disability support services for about 30,000 disabled people. The Ministry’s evidence was that the cost of cancelling the policy if it was found to unlawfully discriminate against the plaintiffs would range from $17 million to $593 million. The evidence from the plaintiff’s lawyers presented by an independent economist was that the potential cost would be at the upper range $32million, but in all probability must lower than this.

The ministry’s estimated cost included the potential decision of 50 per cent of disabled people currently in residential care choosing to live in the family home to be cared for by paid family members.  In considering the evidence the Tribunal said any such decisions would depend on a case by case basis, dependent on the individual’s ability to take up and administer the option. In the Tribunal’s view the financial impact was not likely to be great within the disability sector budget. At the low end of the Ministry’s evidence, this would be 1.43 per cent of the disability budget.

The plaintiffs argued that the policy has allowed the Ministry to avoid paying for the disabled care needs the disabled adult children were already entitled to and the Ministry would otherwise pay and budget for.

The case also only concerns those under 65, which would further contain any potential cost.

Q: Is it right that there is a “social contract” which means family members should not expect to be paid to care for their children?

A: The plaintiffs’ claim applies to the specific disability-related care that their adult disabled children have been assessed as needing. It does not include the food, shelter and clothing that parents provide for their children as a natural part of family life. The Human Rights Review Tribunal and the High Court accepted evidence that noted a Cabinet paper submitted by the Office of Disability Issues to the Social Development Select Committee in 2004. The paper said, “New Zealand, like most countries, has tended to operate with an implicit social contract under which caring is accepted as a natural part of family life and undertaken as a familial duty. 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 own this ‘familial” duty.”

However the same paper recognised that families caring for disabled people have responsibilities over and above those ordinarily faced by families. The paper also noted that under ACC legislation and policy household family members are paid to provide care for family recuperating from accident.

Q: What did the Court of Appeal decision say about the case?

The unanimous decision of the Court of Appeal is that the High Court was correct in its decision and the appeal was dismissed. The Ministry of Health can appeal the case to the Supreme Court or choose to settle the case with the plaintiffs.

Q: What did the Tribunal and the High Court decisions say about the case?

A: The Tribunal found for the plaintiffs. In its decision it said the Ministry of Health’s policy of excluding family members from payment for providing funded disability support services was inconsistent with Section 19 of the New Zealand Bill of Rights Act that specifies New Zealanders should be free from discrimination under grounds including family status. The Tribunal found that the policy was discriminatory and could not be justified.

In its decision on the Ministry’s appeal the High Court said, “The Ministry has failed to demonstrate that the infringement on the right to freedom from discrimination constituted by the policy is justified in a free and democratic society.”

The High Court decision also agreed with the Human Rights Review Tribunal that the Ministry’s policy was at odds with the objectives of the NZ Disability Strategy, “… to put disabled people at the centre of service delivery, that there should be an improvement in the support and choice for those who support disabled people; and that family and whanau and those who support disabled people are given the opportunity to have input into decisions affecting their disabled family member.”

The High Court decision also noted that the policy does not reflect “… the acknowledgement in the UN Convention on the Rights of Persons with Disabilities that persons with disabilities and family member should receive the necessary “protection and assistance” to enable families to contribute to the full and actual enjoyment of the rights of persons with disabilities.”

Q: How long have the plaintiffs sought a ruling on the Ministry’s policy?

A: The plaintiffs first made their complaint to the Human Rights Commission in 2000. The complaint was not able to be progressed with the Ministry of Health and the parents applied for represenation by the Office of Human Rights Proceedings, to take their claim to the Human Rights Review Tribunal. Court proceedings were filed in October 2005. The case has been before the courts since then.

 

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