The decision of the Human Rights Review Tribunal (HRRT) in the matter of claim between Atkinson (and others) and the Ministry of Health was released on the 8th January 2010. You can download it here.
The HRRT hearing ran from the 3rd September 2008 to the 9th October 2008. The fifteen months, from the start of the hearing through to the final release of the Decision, was torture for those of us who, while not plaintiffs, were significantly affected by the outcome. My partner is a high tetraplegic, pre-ACC, and has chosen me as his carer. Paragraph 111 of the Decision most accurately describes our circumstances.
We speculated as to the reasons for the extraordinary length of deliberation. Did the Tribunal simply have no understanding of the Ministry of Health: Disability Support Services? Or was the Tribunal deliberately stalling their decision to give the Government time to respond to what we were fairly confident would be a finding of discrimination under the Human Rights Act?
It would appear that our first guess was correct. Coming from what we suspect was a position of almost complete ignorance, the Tribunal members were forced to go to a Disability 101 default setting.
The Decision is a plain English document that assumes the reader has no prior experience of the Ministry Of Health: Disability Support Services (MOH: DSS) system.
To this date, five years on, I have read no document that so clearly and cleanly describes the lived reality of accessing supports through MOH: DSS for those disabled adults with high, very high and complex care needs. Paragraphs 17 through to 40 of the Decision have been removed as they describe the types of care needed by the plaintiffs or the adult children of the plaintiffs. This care is personal and intimate, sometimes involving procedures usually performed by qualified medical personnel. There are challenging behaviours, manual transfers and special feeding protocols to avoid choking.
While gaining ‘independence’ is a worthy ideal, the reality for many MOH: DSS clientele is that true independence (i.e. able to live without the direct assistance of others) is simply not possible. For this group of disabled people, the care needed requires a high level of skill and expertise. The support required is often impossible to timetable to X number of hours per day, and is often needed at short notice. Failure to provide this high standard of care can seriously adversely affect the person with a disability...leading to injury, illness and sometimes death. The plaintiffs describe in paragraphs 42 and 43 of the Decision the inadequacies of care they had received from service providers.
The Tribunal grasped the inadequacies of the Needs Assessment and Service Coordination (NASC) process, and the examined in some depth the utterly nonsensical concept of “natural supports”, on which the NASC system is predicated.
The Tribunal was told that the NASC assessment covered
“... the following areas: living situation; current support networks (to include family members, neighbourhood and community/social groups, schools, church groups, Scouts, Girl Guides, service groups, sports and other clubs) ...” [para 53]
Paragraph 54 states:
“The individuals and organisations bracketed in the last paragraph above were described to us as “natural supports” for the family and this topic will be reviewed later.”
Let’s take a moment to look a little closer at “natural supports”.
The Ministry claimed in their submissions to the Tribunal that the care provided by the plaintiffs to their adult children with disabilities was “natural support” and should not be paid [6, 11,]. Now, we have already ascertained that the nature of some of the care required by these MOH: DSS clients is so personal and sensitive in nature that details have been permanently suppressed [17-40]. We should also remember that these cares often require skills and expertise beyond the capacity of most service providers to meet safely.
The Ministry of Health should ask itself, “Would it be appropriate to ask the Girl Guides to perform these tasks?” If the answer is “No”, then this type of care should not be described as “natural support”.
However, the Ministry of Health was clearly quite obstinate in its stance on this issue, and the Tribunal Decision devotes 33 paragraphs [116-149] to a discussion of “natural supports”, culminating in expressing a desire to see a test of “reasonableness” brought into the equation [45].
Not too much to ask, surely?
The Tribunal dares to actually state that MOH: DSS clients “...are entitled to funding assistance....for their care.” [165 c]
This is significant, as MOH: DSS documents rigorously avoid ANY use of the word “entitlement” when it comes to funding for Home and Community Support Services. In fact, at the High Court hearing in September 2010 on this decision, one of the Crown Lawyers said as part of her argument against the HRRT finding of discrimination, “These people have a sense of entitlement.”
The Tribunal heard much discussion on the history of the issue of paying family carers, dating back to “Hill v IHC NZ (Inc)” from 2001. The Hills complained to the then Complaints Review Tribunal that the IHC disallowing them to be employed as their son’s caregivers was a breach of the prohibition against family status discrimination. [65]
“The CRT found that in fact there was no explicit or implicit policy on behalf of government to do so and found that the policy was at the discretion of the IHC and was discriminatory.” [66]
Five years of ‘executive level discussions’ ensued, debating the issue of paying family carers of MOH: DSS clients. These discussions were halted in late 2005 when the Atkinson case began in earnest.
However, the Tribunal heard from the Ministry of Health that the ‘policy’ (of not paying family carers) “...is given legal effect through the exercise of power in s10 (2) New Zealand Public Health and Disability Act 2000...” [216] The Tribunal highlights in the next paragraph a quote from a Ministry Of Health revised draft paper from December 2005 on the issue of paying (or not paying) family carers.
“The policy of ineligibility of family members for contractual employment as caregivers of disabled people has never been set out in legislation, or been subject to formal executive approval by Cabinet. Because of this, it lacks a clear and transparent basis.” [217]
No wonder the Government rushed to amend the Public Health and Disability Act in May 2013.
This is the same document that is referred to in paragraphs 76 and 77, “Payments to and Support of Family Caregivers of Disabled People: ineligibility of family members for contractual employment as Caregivers: an assessment”, which stated that “the Ministry of Health should retain the right to make exceptions to this policy, and should develop a consistent basis for this.”
The Decision devotes five paragraphs [88-92] to the “Exceptions policy”. (This particular aspect demands some considerable discussion, so we may come back to it in another post.)
The Ministry of Health gave a list of reasons to support the non payment of family carers [13] and the Ministry of Social Development said they had a “number of difficult and complex ethical practical problems.” [68]
Most of these were addressed in paragraphs 93 -103 which looked at the ACC experience with paying family carers. ACC clients(in the National Serious Injury Group) have the inalienable right to have resident family members as their paid carers. These family carers often provide all the care needs of the client. ACC has a legal obligation to fund this care and they would be unable to meet their statutory obligations without utilising family members. The Tribunal took note of the fact that there was a joint MOH: DSS / ACC service specification for Home and Community Support Services (2008), and stated that,
“It would seem artificial to us to make a distinction as to payment options to family members for home care, purely on the basis of the cause of the disability” [103]
The Tribunal also discusses at length the influence that the New Zealand Disability Strategy should have had on the Ministry of Health’s formulation of policy surrounding Disability Support Services. [104-115] It would appear that the Tribunal was idling under the illusion that the Strategy actually had relevance and that government departments when citing the Strategy (as MOH: DSS are wont to), do so in good faith.
As impressed as I am with this Decision, and the work that clearly went into the case, there is one glaring omission from the plaintiffs’ list of government documents that supported their case.
In March 2008, the National Advisory Council on the Employment of Women (NACEW) released a report called “Financial support for family carers “. This document says that under certain circumstances (and the plaintiffs most definitely qualified);
“Paid roles for family carers would need to be agreed by the client and the family carer as part of a comprehensive client care plan. Any paid role taken on by family carers would be explicitly included in this plan as a replacement for a service that would otherwise be provided formally.”
And,
“As the family member would be contracted to undertake specific tasks, they would be paid the market rate for the tasks being performed. In other words, payment would equate to that received by workers delivering formal care services.”
This sentiment was recently echoed by the United Nations Monitoring Committee for the Convention on the Rights of Persons with Disabilities in its Concluding observations on the initial report of New Zealand in October 2014.
“The Committee recommends that the State Party reconsider this matter to ensure that all family members who are carers are paid on the same basis as other carers...”
Please.