Caring for disabled adult family members

Payments for Providing Care for Disabled Adult Family Members

The Commission has been involved in a number of legal cases related to payments to individuals who provide care to disabled adult family members. Copies of some of these decisions are included below. Over the past few years the New Zealand courts have consistently held that the Ministry of Health’s former “blanket ban” on making payments to family members for providing care discriminates against people on the basis of their family status. Discrimination on the basis of family status is prohibited under the New Zealand Human Rights Act.

In 2013 the Government passed legislation in response to the court decisions. This legislation was passed under urgency without the usual opportunities for public input. The legislation is known as the New Zealand Public Health and Disability Amendment Act (No2) 2013. It prohibits payments being made to family members except in accordance with Funded Family Care policies to be developed by the Ministry of Health. The Funded Family Care Policy that has since been developed permits payments to some family members (but not spouses or partners) in some narrow circumstances. The legislation also prevents any future claims being taken to the Human Rights Commission, the Human Rights Review Tribunal or the courts alleging that the new policy is discriminatory.

This legislation has been a source of significant concern to the Commission and many other groups. The way in which it was passed into law, and the way in which it prevents access to usual legal remedies for certain types of discrimination is unacceptable.

The Disabled People Assembly has submitted a petition to the Health Select Committee seeking the repeal of the New Zealand Public Health and Disability Amendment Act (No2). The Human Rights Commission supports this petition. You can read the Human Rights Commission’s submission to the Select Committee here.

You can read the Disabled Person’s Assembly’s Petition here:

You can find out more about the Ministry of Health’s Funded Family Care policy here.

The Ministry of Social Development’s publication A Guide for Carers provides information on where informal carers can get support and funding. This guide provides information on the type of funding available for informal carers, the services covered and where to obtain funding for disability support services for long term conditions. It also describes the role of the Needs Assessment and Service Coordination (NASC) agencies and what should be taken into account when an assessment is carried out.

Ways in which further information or support might be available could be discussed with Carers New Zealand which is a national charitable trust and the secretariat for the New Zealand Carers Alliance. More information on the trust is available here or by calling 0800 777 797.  

What does the ‘Parents as caregivers’ case mean for people looking after their disabled adult family members?

The Government decided not to appeal a decision at the Court of Appeal on the case commonly known as the parents as caregivers case. The case challenged a Ministry of Health policy that excluded family members from payment for the provision of disability care services to their disabled adult family members.

The Ministry of Health has undertaken to change its policy to reflect the court’s decision. The Commission is working on the best path for people who have made a similar complaint but who were not involved in the actual case.

Before bringing a similar complaint to the Commission, anyone who considered they were presently being discriminated against by the same policy would first need an assessment by a Needs Assessment and Service Coordination (NASC) organisation to access most health and disability support services funded by the Ministry of Health or a District Health Board.  A list of NASCs is available at the Ministry of Health’s website or by telephoning the Ministry’s disability number 0800 DSD MOH (0800 373 664). For older people (that is, people over 65 or aged between 50-64) who have similar needs, information is available on the Ministry’s website or by calling the local District Health Board or local hospital and asking to talk to the NASC team for older people.

To discuss a particular situation or get further information about the present system see the Ministry of Social Development’s recent publication A Guide for Carers. It provides information on where informal carers can get support and funding. This guide provides information on the type of funding available for informal carers, the services covered and where to obtain funding for disability support services for long term conditions. It also describes the role of the Needs Assessment and Service Coordination (NASC) agencies and what should be taken into account when an assessment is carried out.

Ways in which further information or support might be available could be discussed with Carers New Zealand which is a national charitable trust and the secretariat for the New Zealand Carers Alliance. More information on the trust is available here or by calling 0800 777 797.

Ministry of Health v Spencer [2015] NZCA 143

The Court of Appeal's judgment in Attorney General vs Spencer was released on the 4th of May 2015.

The case concerns the Ministry of Health's appeal against the ruling in made by the High Court in Spencer and was rejected by the Court of Appeal on both counts. 

This case followed on from the Court of Appeal’s decision in Ministry of Health v Atkinson& Ors which held that the Ministry of Health's family carer policy constituted unlawful discrimination on the basis of family status.

You can read the Court of Appeal's judgment here.

Disability Commissioner, Paul Gibson welcomed the decision in Ministry of Health v Spencer commenting that it once again confirms that it is discrimination against family member carers to not pay them.

Ministry of Health v Atkinson & Ors

Background

The Court of Appeal has issued a declaration that a Ministry of Health policy that excluded the plaintiffs from payment for the provision of disability support services to their disabled adult family member was discriminatory.   In each case, an adult disabled family member was assessed by the Ministry as eligible for a paid support worker.  However, this worker could not be a family member.

The Government decided on 12 June 2012, that it would not appeal the decision.

Timeline:

  • September 2008: Ministry of Health v Atkinson and Ors heard at Human Rights Review Tribunal.
  • January 2010: Human Rights Review Tribunal decision finds that the plaintiffs were discriminated against by reason of their family status because of the Ministry of Health policy.
  • September 2010: An appeal by the Ministry of Health is dismissed by the High Court.
  • February 2012: The Ministry of Health appealed the decision to the Court of Appeal. A full bench of the Court of Appeal considered the case.
  • 14 May 2012: The Court of Appeal dismissed the appeal in a decision that endorses the decision of the lower courts.
  • 12 June 2012: The Minister of Health announced that the Ministry will not seek to appeal the decision to the Supreme Court. Health Minister Tony Ryall said, “The Government accepts the current Health Ministry policy of not paying the close family carers of adults with disabilities needs to change, and we will not be seeking leave to appeal this decision to the Supreme Court.” He said the Ministry of Health would review the policy to address the issues raises. “The future policy needs to balance the interests of those who are being cared for, the families and the taxpayers. It will address the discrimination. But it must be affordable.”
  • April 2013: The Ministry of Health will announce its new policy by mid-June.

The Human Rights Commission intervened in proceedings at the Human Rights Review Tribunal later that year. The aim of the proceedings was to address the question of remedies.

Questions and answers about Ministry of Health v Atkinson & Ors

Q: What was the plaintiffs’ claim in brief?

A: The plaintiffs are either family with adult disabled family members or adults with disabilities. The disabled family members 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 family status.  The plaintiffs claimed the Ministry discriminated against them because it would not pay for the specialised care the disabled adults were 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.

Q: Who is representing the parents and their disabled family in what is 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 intervened because 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 intervened in the Court of Appeal hearing because the decision by the court was 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: What are the likely cost implications?

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 $32 million, but in all probability it would be much lower than this.

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

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

A: The plaintiffs’ claim applies to the specific disability-related care that their adult disabled family have been assessed as needing. It does not include the food, shelter and clothing that parents provide 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 needing long term support as the result of an accident..

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 the right to freedom from discrimination under 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.

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 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 members 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 decision 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 representation 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 heard in the tribunal, the High Court, and the Court of Appeal. The Government decided to not appeal the case to the Supreme Court on 12 June 2012.