The Fault in Our Funded Family Care Policy: Why New Zealand should reform how family carers of disabled New Zealanders are compensated
By Lauren White
The Government has been sending mixed signals to the international community. On one hand, they have ratified the United Nations Convention on the Rights of Persons with Disabilities, displaying a commitment to preserving the rights of New Zealanders who live with disabilities. On the other hand, ahead of their periodic report on New Zealand, the UN have raised concerns about discrimination in a piece of legislation about providing care for disabled relatives – the New Zealand Public Health and Disability Act 2000 (NZPHDA).[1] These are the same concerns they outlined in the previous report.[2] In four years, nothing has changed.
The UN have not been the only ones finding issues with this legislation – human rights groups, New Zealand’s community of people with disabilities and the New Zealand Courts have all emphasised how this Act undermines the rights of disabled people and relatives who care for them.[3]Before 2013, the Ministry of Health had a policy of never paying carers of adults with disabilities if they were related.[4] However, as the Court of Appeal asserted in Ministry of Health v Atkinson, this policy caused unreasonable discrimination based on family status.[5] In direct response to the Atkinson cases, the Government passed the New Zealand Public Health and Disability Amendment Act 2013.[6] The Act created the Funded Family Care (FFC) policy, with the Ministry of Health committing to providing ‘support services’ for family members, including paying them for providing care.[7] This was a major step in improving the situation of family carers, however the legislation still draws severe criticism. The three key issues with the legislation are:
The discriminatory nature of the policy;
How it prevents appeals to the Human Rights Tribunal; and
How fast it was passed through Parliament.
Discriminatory nature of the policy
Despite the NZPHDA bringing about funding for family carers for the first time, FFC policy is still discriminatory on several fronts.Firstly, the policy pays family carers less than carers doing the same job, but who are not related to their dependant. The Act states that rates of payment the policy sets can be lower than the average wage rate of non-family carers doing the same job.[8] FFC Policy has set the payments as being the adult minimum wage, cementing the family carer’s income at the lower end of what an unrelated carer would receive.[9] This is a result of the Government’s preoccupation with minimising spending, but they have become unnecessarily conservative.[10]
How the Ministry of Health determines the number of hours a family carer must be paid for is also very restrictive. The Ministry has set the maximum amount of time a family carer can be paid for at 40 hours per week.[11] This is inconsistent with the reality of family carers, who are often providing care for 24 hours a day, all week long. The recent case of Chamberlain v Ministry of Health illustrates this, where mother Diane Moody testified that she provides 24-hour care, including recurring night-time support.[12] However, the Ministry of Health only granted 17 hours’ worth of wages per week, as they only allocated funding for “personal care and household management tasks.”[13] The Court found that the Ministry had been construing that phrase quite narrowly, which was not consistent with the purposes of providing care to the benefit of disabled people.[14] The Ministry has been failing to identify the whole range of tasks available for funding, and subsequently has been failing to provide proper support for carers.[15]
Secondly, the Ministry of Health policy that resulted from the legislation still discriminates based on marital status. The Act itself defines a family member as including spouse, civil union partner or de facto partner, among others.[16] However, the subsequent ‘Funded Family Care Notice 2013’ stated that the Ministry of Health’s policy would still exclude spouses, civil union partners or de facto partners from receiving payment.[17] The statute does not explicitly discriminate based on marital status, but it allows the Ministry of Health to do so by empowering them to define which family relationships are eligible for support in their policy.[18] By giving the Ministry such powers, the Act did not sufficiently protect family carers against discrimination. This policy has led to difficulties for many New Zealanders with disabilities and their partners. If a person is the full-time caregiver for their disabled partner without any other employment, they have no source of income. Peter Ray and his partner Rosemary are an example of this – they have been living in a house bus because living elsewhere is too expensive, and Rosemary is his unpaid caregiver with no source of income.[19] As Peter points out, he is entitled to choose his caregiver, as are all New Zealanders with disabilities.[20] By denying funding to partners, the policy discriminates against New Zealanders with disabilities for exercising their right to choose who cares for them.
Moreover, the Ministry’s policy excludes people with disabilities based on age. The NZPHDA allows for the FFC policy to base eligibility on age.[21] Based on this, the Policy is limited to family who care for a disabled adult, 18 or over.[22] This is a result of the Ministry’s preoccupation with the idea of a ‘social contract,’ where any care a family gives to a disabled family member is their duty.[23] This idea has been diluted with the change in policy, but minors are still considered the duty of family, and so they are excluded from funding. Again, this impacts unemployed family members who depend on benefits rather than a wage, which is given to carers in the same situation but with older dependants.[24]
Article 5 of the Convention on the Rights of Persons with Disabilities promotes non-discrimination against those with disabilities.[25] By discriminating on these fronts, the FFC policy violates the rights of disabled people depending on who they receive care from. Depriving family carers of the full funding and support will affect their dependants, lowering the quality of life and care that they receive. This is not an issue faced by people with disabilities under state care. The NZPHDA should be amended, so that the FFC policy cannot discriminate in this way.
Right to Appeal
Controversially, the NZPHDA also barred family carers from challenging discriminatory parts of the legislation in court. Section 70E sets out that any claims of discrimination under the Act based on age, disability, marital or family status cannot be made to either the Human Rights Commission, any Court or any Tribunal.This kind of provision is not wrong in a technical sense, but it is from a moral standpoint.[26] Section 70E goes against the right of citizens to judicial review as set out in the New Zealand Bill of Rights Act 1990, however Government is legally allowed to overrule this.[27] There is also the ‘rule of law,’ a legal principle that declares ‘all people are equal under the law,’ including the Government.[28] The ‘rule of law’ also states that Government can be held accountable in Court by citizens.[29] However, this is a general rule, rather than a legal requirement.The theme of the New Zealand legal system is that New Zealanders should be given a voice to balance the major power that the Government has over them. Taking away this voice is against the spirit of a democratic society, as it denies citizens their right to speak up against Government action.[30] The UN has emphasised that those living with disabilities need the protection of the law because of their vulnerability, but here, vital protections are being denied.[31] With the FFC, the Government has heightened power over family carers and their dependants as they control their economic situation, which impacts the care they provide. To prevent a major imbalance of power, the carers should be able to make these complaints and bring claims to the Courts.
Urgency
Another issue is how quickly the Act was passed through the House of Representatives. Minister Tony Ryall used an ‘urgency motion’ to pass the NZPHDA. An ‘urgency motion’ is when Government passes a bill within a day.[32] This is made possible by holding all three bill readings in one day and not sending a bill to a select committee.[33] Therefore, the Act is passed without receiving input from the public or specialist groups.[34]Urgency is a contentious method of passing bills. Sending a bill through urgency ultimately compromises the quality of the final legislation for two reasons. Firstly, the politicians do not get enough time to get a firm grasp on the content, let alone refine it.[35] The usual process of spreading out the readings of the bill gives the opposition more time to familiarise themselves with the bill and its context, so they can better challenge the bill.[36] This does not seem desirable, but having meaningful debate is what helps improve bills, and without it, the legislation will not be as effective as it could have been.[37]
Additionally, the democratic element of the legislative process is lost when those outside Parliament are excluded.[38] The Human Rights Commission has pointed out its displeasure at the dismissal of the select committee process, which locked out interest groups such as itself and the public.[39] Interest groups often have specialised information and experience on the area of the policy that politicians simply do not have, by virtue of being a politician who has to address a number of policy issues. Interest groups can provide expertise on a subject or life experiences. Those would have been valuable in passing the NZPHDA, as understanding the life experiences of people with disabilities and the nature of the care required would most likely have impacted how the Act was structured.
More importantly, the Bill directly affected the lives of private individuals, and so they should be able to influence the legislation. In this case, the family carers are not only unable to challenge the legislation after the fact, but they also had no say while the legislation was being made. This is problematic because the outcome of the legislation affects their only source of income and their ability to care for a loved one. A legislation with such personal impact should be subject to democratic process, but it has been denied here.
It can be useful to avoid the lengthy process of passing a bill that, without urgency, can take months.[40] However, the interest of quick solutions must be balanced with the interest of having well-made law.[41] In this situation, there was no need for immediate policy – as the Opposition pointed out during the House, there had been no change in policy for over 13 years, and there seemed to be no material benefit in speeding up the process.[42] On the other hand, there were many reasons to be careful while drafting the legislation. The legislation directly affected the income of many New Zealanders, and subsequently their relatives who were dependant on them to be their carer. Ensuring they have enough to live on and care for some of the most vulnerable in society should be a higher priority than time constraints.The effect of urgency has been that the NZPHDA amendment was constructed hastily and poorly, disadvantaging those the Act was supposed to help.
There are many flaws with New Zealand’s Funded Family Care policy. These flaws can only be fixed with legislative review that is well considered, takes input from those affected and is consistent with basic rights and freedoms from discrimination. The parties that make up the current Government have supported this since the Amendment was passed, and reform was one of the policies on which the Labour Party campaigned.[43] However, so far, nothing has changed. Hopefully, the upcoming UN report will finally inspire action. For too long, family members of disabled New Zealanders have faced discrimination for trying to care for their loved ones; it is time for Labour and its government to make meaningful change.
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[1] Committee on the Rights of Persons with Disabilities “List of issues prior to submission of the combined second and third periodic reports of New Zealand” (23 March 2018) United Nations <www.un.org> at 1.
[2] Committee on the Rights of Persons with Disabilities “Concluding observations on the initial report of New Zealand” (31 October 2014) United Nations <www.un.org> at 2.
[3] “Caring for disabled adult family members” Human Rights Commission <www.hrc.co.nz/enquiries-and-complaints/faqs>.
[4] Human Rights Commission, above n 3.
[5] Ministry of Health v Atkinson [2012] NZCA 184, [2012] 3 NZLR 456 at [43]-[46] and [185].
[6] (16 May 2013) Volume 690 NZPD at 10116–10117.
[7] Section 4.
[8] Section 70D(3)(c).
[9] “The Funded Family Care Notice 2013” (26 September 2013) 131 New Zealand Gazette 3639 at 3670.
[10] Kirsty Johnston “The longest fight: Families push Government for caregiving law change” The New Zealand Herald (online ed, Auckland, 6 March 2018).
[11] “The Funded Family Care Notice 2013”, above n 9, at 3670.
[12] Chamberlain v Ministry of Health [2018] NZCA 8, at [12] and [20].
[13] At [26].
[14] At [69]–[74].
[15] At [83]–[85].
[16] Section 70B(2).
[17] “The Funded Family Care Notice 2013,” above n 9, at 3676.
[18] Section 70D(3)(a)(i).
[19] Johnston, above n 10.
[20] Johnston, above n 10.
[21] Section 70D(3)(a)(iii)
[22] “The Funded Family Care Notice 2013,” above n 9, at 3675.
[23] Atkinson v Ministry of Health (2010) 8 HRNZ 902 (HRRT), at [12] and [184].
[24] Johnston, above n 10.
[25] Convention on the Rights of Persons with Disabilities and Optional Protocol GA Res 61/106, A/Res/61/106 at art 5.
[26] Philip A. Joseph “Constitutional Law” [2015] NZ L Rev 683 at 701–102.
[27] Bill of Rights Act 1990, s 4 and s 27(2).[28] Dictionary of New Zealand Law (online ed, Lexis Nexis) at [rule of law].
[29] At [rule of law].
[30] Joseph, above n 26, at 702.
[31] Above n 25.
[32] Sascha Mueller “Where's the Fire: The Use and Abuse of Urgency in the Legislative Process” (2011) 17 Canta LR 316 at 316.
[33] At 316.
[34] At 319.
[35] At 319.
[36] At 319.
[37] At 318–319.
[38] At 319.
[39] Human Rights Commission, above n 3.
[40] Mueller, above n 32, at 326–327.
[41] At 322.[42] (16 May 2013) Volume 690 NZPD at 10121.
[43] (16 May 2013) Volume 690 NZPD at 10121–10127; Kirsty Johnston “Labour Party politicians cagey over family carers law repeal” The New Zealand Herald (online ed, Auckland, 6 March 2018).