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Hot Issues January 2010 (PDF 92Kb)
Landmark decision for families of disabled people
In this Hot Issues we outline the landmark Human Rights Review Tribunal decision on Atkinson and others v Ministry of Health issued on 8 January www.nzlii.org/nz/cases/NZHRRT/2010/1.html.
The Human Rights Review Tribunal (the Tribunal) declared that the Ministry of Health (MOH) practice and/or policy of excluding specified family members from payment for the provision of funded disability support services is inconsistent with the New Zealand Bill of Rights Act 1990 (NZBORA). In particular, the Tribunal found the MOH practice and/or policy limits their right to freedom from discrimination on the grounds of family status, and is not a justified limitation.
The Government has signalled it will appeal the decision.
Key points from the Human Rights Review Tribunal decision
Highlights from the Tribunal’s decision are its:
- support for the New Zealand Disability Strategy (NZDS), which should guide policy development. The Tribunal agrees with the select committee disability inquiry that the NZDS has not been effectively implemented
- finding that parents who care for their moderately or severely disabled adult children are providing disability supports, not natural supports
- finding that MOH had no basis for its policy at the time it was introduced or since, and the Government had been warned it could breach the Human Rights Act and NZBORA. However, subsequent extensive policy work was put on hold, with only the development of the Carers’ Strategy progressing
- finding that most of MOH’s justification for its policy of excluding family members from payment lacked a rational, if any, basis. This includes the fact that ACC pays family members for providing care to disabled family members
- finding that there was no evidence of significant fiscal implications of its decision as the disabled family members were already eligible to have their MOH funded care provided by paid care givers, whether receiving it at present or not
Overall, the Tribunal encourages a long overdue debate around responsibility for caring, payment for caring, and how to further recognise and value the caring role.
What is the case about?
The case revolves around whether parents, spouses or other family members living with their disabled family members, who qualify for MOH-funded disability support services, should be paid for providing these services to them. Other family carers who don’t live in the family home are able to be paid under the current MOH policy.
The family members – in this case seven parents or resident family members and two adult disabled children who chose them to provide some or all of their care – said the care giving family members should be paid as are other carers providing the same disability support services.
The families claimed the MOH policy and/or practice is unlawful discrimination in that otherwise available and willing carers are excluded from being paid for disability support services by reason of their family status. Further, disabled people who are eligible to receive paid disability support services are denied the opportunity to choose to have their parent, spouse or resident family member as their paid carer by reason of their family status. Family status – in this case being a relative of a person – is a prohibited ground of discrimination in the Human Rights Act 1993.
Concerns they expressed about paid carers included: having a person from outside the home providing intimate care; not being comfortable with a stranger entering their home, particularly with regular changes in personnel; minimal carer training; the standard of care; reliability and availability; and their lack of choice in who provided the care.
What the Ministry of Health argued
MOH acknowledged its policy had never been set out in legislation or been subject to formal approval by Cabinet.
MOH’s main argument was that what each parent provides their adult child is care through natural family supports. This is different from the care provided by paid disability support workers. It also stated it is not generally in these family members’ interests to provide disability support services to disabled family members.
The MOH justification for its policy and/or practice is that it reflects the implicit social contract between families and the state under which families are recognised as the fundamental unit of society. The state does not pay families to look after their own. It was concerned about the costs implications for government.
MOH gave a number of other specific reasons to back up this policy and/or practice. These included that the policy encourages the independence of disabled people, avoids professionalising or commercialising family relationships, avoids families becoming reliant on the money, avoids unsustainable care burdens and social isolation of family members, and ensuring that services meet quality standards.
What the Human Rights Review Tribunal decided
The Tribunal decided that MOH’s policy and/or practice did discriminate against unpaid family carers, which was not justified. Much of the case centred on whether MOH could justify this discrimination.
There were two steps to coming to this decision:
- Is there discrimination as prohibited under s.19 NZBORA – the families had to prove this
- If so, is it a justified limitation under s.5 NZBORA – MOH had to prove this
The Ministry of Health policy discriminates against family carers
For the first step, the Tribunal found that the MOH policy discriminates against family carers by excluding them from being paid for providing the same or similar care. This was compared to everyone else able and willing to provide disability support services to the same person.
This distinction was solely based on the prohibited ground of family status. The family carers were disadvantaged by not being allowed to be paid, while anyone else providing the same care to their adult children is able to be paid. Their adult children were disadvantaged by their lack of choice of a care giver.
The families had therefore satisfied the first step.
The Ministry of Health policy is not justified
In relation to the second step, the Tribunal found that the MOH policy to exclude certain family members from payment of disability support services by reason of their family relationship, was not justified. (This was assuming, but not deciding, that the MOH policy excluding this was “prescribed by law” as an initial requirement for it to be justified.)
No evidence was presented that analysed and justified this exclusion at the time it was introduced in the early 1990s, or since. Nor did the Tribunal accept the arguments MOH put forward at the hearing justifying the exclusion.
The reasons the Tribunal gave for its decision are:
- Support by family members given to heavily dependent persons, particularly when they reach adolescence and adulthood, cannot be considered as “natural” support. There is a difference between the natural support families can provide, as distinct from the disability support needed by disabled people.
- The argument that this natural support should be given as part of an unwritten “social contract” is not supportable. There are numerous instances where the state has offered financial assistance to families, precisely because of family status.
- There is no rational connection to the policy’s purpose because it does not appear to promote equality of outcomes, encourage the independence of disabled people or support the development of family relationships – in fact, it could have the opposite effect.
- The MOH policy is also not rational in avoiding professionalising or commercialising family relationships, when numerous such arrangements exist. People with disabilities should be not excluded from such relationships because they are disabled (which would be discriminatory and against the objectives of the NZDS).
- While there is a risk that such payments may discourage disabled family members from leaving home because of the financial repercussions, this can be mitigated by careful monitoring and counselling.
- In agreeing with the need to ensure that carers do not undertake unsustainable care burdens and become socially isolated, this risk is likely to be greater where care is provided by family members outside of MOH assessment and funding practices. MOH monitors these concerns and has policies in place to alleviate these risks.
- There is no evidence to show that the financial impact of a policy to pay family members currently excluded by the policy would not be sustainable. The impact is not likely to be great within the disability sector.
- Significant policy decisions in the disability sector should apply the objectives of the NZ Disability Strategy – the policy to exclude certain family members from paid care acts against several of the accepted objectives of the strategy.
Of particular note, the Tribunal states:
It is not rational to suggest that some plaintiffs with major cognitive and behavioural problems (including potential risks to other persons) could achieve greater levels of independence as a result of the policy of not paying family members for their care. In fact, the reverse is likely – if placed in positions where their day-to-day/hour-to-hour/minute-to-minute care is less than provided by parental oversight at home, then the degree of independence allowed them could be much reduced in the out of home setting.
Hot Issues sets out in more detail the Tribunal’s discussion on key points regarding the lack of justification for the MOH’s position, as these are central to the decision and ensuing debate.
The social contract and natural supports
The Tribunal did not accept that there is such an implicit social contract that influences a national consensus, as invoked by MOH as the main reason for its policy precluding payment. There are many circumstances in which the state makes financial provision for people, including to assist family carers. Examples include family and similar tax credits, the former Family Benefit and ACC paying carers. The policy derived from the concept of a social contract is also contrary to relatively newly established law as being discriminatory.
The Tribunal noted the general societal expectation that the family is the prime caregiver for infants and children without major disability, as the natural support until they reach adulthood. It does not regard it as natural for such support for personal care to be carried into adolescence and adulthood. The Tribunal classifies this as the need for “disability support” rather than “natural support”, saying a clear distinction needed to be drawn between the two.
Once adulthood is reached the expectations placed on the family of a disabled person should not be greater because a family member is disabled.
The concept of “natural support” is very flexible, the Tribunal says. The boundary between natural support and MOH-funded support is a movable and fluid interface, depending on a number of variables. These include: the type and level of disability, the level of available natural support in the home setting, the wishes and needs of the family, and the disabled person’s views, which may change over time.
A standard approach is therefore not appropriate to determine where the boundary is drawn between what a family can or should do in support of a disabled family member, the Tribunal found.
It sees the test of “reasonableness” as key in determining the level of personal care family members would be expected to provide. This must be assessed on an individual family/ whānau/aiga case-by-case basis, taking all the variables into account.
The Tribunal stated that family members who decide they are able to provide care over and above what would be regarded as a reasonable level of natural support, should not be disadvantaged because they are prepared to do so.
ACC pays family carers
In coming to this conclusion the Tribunal made much of the fact that ACC employs family carers, including parents and spouses, to provide disability support services to family members permanently disabled by injury. ACC is allowed, indeed required, to do so under its own legislation.
More than half of ACC’s home support services are provided in this way, as an integral part of its care strategy in the home setting. It uses a “reasonableness” test in ascertaining what are “natural supports”. ACC sees the age of 14 years as the time when parental care can be paid.
ACC and MOH had jointly developed a common set of eligibility and service specifications for the home based care of disabled people, whatever the cause of their disability. The Tribunal observed it seems artificial to make a distinction as to payment options for family members for home care, solely on the basis of the cause of the disability.
Recent ACC reviews of New Zealand and international experience found:
- There is no difference in quality and rehabilitation of cases between the use of contracted and non-contracted (family members and informal carers) in home care
- There is little difference in outcomes of care for disabled people, whether or not family members are paid for their caring functions
- There are risks with both types of care for clients, which could be reduced with better monitoring and accountability mechanisms
- Issues relating to family carers could be addressed (which ACC is doing)
- Direct payments enhance independent living in terms of giving choice and control to disabled people and facilitating social inclusion
From the experience of ACC in the payment of family members as home carers, the Tribunal did not consider excluding the parents of those with non-accidental disability from equivalent payment arrangements to be a supportable policy position.
Financial implications
Historically, one of the “demonstrably justified” limitations given for prohibiting payment to parents and spouses for caring for a family member were the “substantial fiscal implications” of such a policy decision.
No evidence was presented to the Tribunal that showed the fiscal implications of paying family members had been fully evaluated when the policy was first formulated in the early 1990s. There was nothing to show a detailed study of the costs and benefits – and the wider impact of a policy to prohibit payments to parents and spouses – had been carried out at that time.
The analyses carried out for the hearing by expert witnesses did not clarify the potential impact of a policy change, the Tribunal said. No precise or even approximate financial impact could be stated with any confidence as a result. Much more solid policy and funding analysis would be needed, to make a convincing case, one way or the other.
The Tribunal concluded that costs would not be significant if family carers were paid. The likely impact the Tribunal estimated was based on the following:
- For those disabled people currently being cared for by external, non-family care givers who may wish to change to paid family members – cost neutral
- For some highly dependent disabled persons, already receiving non-residential support care from immediate family members, who could now be paid – a high number was not expected
- For those up to 29,000 people with severe disabilities currently receiving no or minimal services from any source – as almost all would be entitled to financial assistance under current policy, a policy extension to pay family members would not change this
- For those currently in residential care who may wish to switch to care in the family home, provided by parents or spouses – a significant number was not expected. The Ministry policy position is that any payment for home based support services should not exceed the average cost of living in residential services
MOH could also take measures to limit the financial impact.
The New Zealand Disability Strategy
The Tribunal considered the New Zealand Disability Strategy to have significant relevance to the case, as a fundamental document underpinning policy development for the care of disabled people www.odi.govt.nz/resources/publications/nzds/index.html. It had in fact been used for such purposes, including by MOH.
However, the Tribunal observes that the MOH policy seems to act contrary to objective 15 of valuing “...families, whānau and people providing ongoing support”. In fact, it has the potential to lessen the supports and choices to those who support disabled people.
The Tribunal focused on the strategy’s vision of a non-disabling society in which individual choices are available and respected and interdependence is recognised and valued, especially the important relationships between disabled people and their families. It pointed, in particular to objectives 7.1 and 7.2 (Create long-term support systems centred on the individual) and objectives 15.2 and 15.4. The Tribunal highlighted the need for debate on the caring role, as set out in objective 15.7.
The last words in the Tribunal’s 56-page decision before setting out the result of the case were on applying the objectives of the Disability Strategy.
What others are saying about the decision
Early responses to the Human Rights Review decision include:
Editorials since show how diverse reactions are:
These are matters that would benefit from wide and informed public debate over the next months. The Human Rights Commission and Carers New Zealand are inviting comment about the decision from interested parties www.hrc.co.nz and www.carers.net.nz.
Final comment
The Human Rights Review Tribunal decision has come at a pivotal time.
The sector is already grappling with some complex issues in relation to the funding and purchase of support services, individualised funding, local area coordination and supported independent living. Put the recent sleepover decision, the industrial issues of last year and the still warm recommendations from the Parliamentary Inquiry calling for disabled people and their families to have more flexibility, choice and control in their support arrangements into the mix – then there is a lot to think and talk about.
The Tribunal examined the cornerstones of government disability support policy, natural supports, what is reasonable, the implicit “social contract” and assessment of support needs. Clearly there is now an opportunity for the rest of us to examine these policy fundamentals with fresh eyes and consider if these are the appropriate enablers for an “ordinary life” for disabled people and their families.
We might also want to think about what drove this group of parents to take such serious action.
Were there years and years of difficulties with accessing quality carer relief and respite care? Did they get the breaks they wanted and needed? Did they get real support from friends, family and their local community? Were the support service organisations able to be flexible and responsive to their disabled family members’ needs? What was their experience of interacting with a poorly paid, undervalued and transient disability workforce? Did they make an active decision to have their disabled adult family member continue to live at home or did this situation develop because of inadequate or inaccessible supports available for them to live independently?
Was the decision to trigger a human rights process linked to the years of experiences with schools, doctors, needs assessors, specialists and community groups where the human rights of their disabled family member were not even recognised, let alone responded to?
Is the Human Rights Review Tribunal decision about the payment of family carers or is it more about a disability support system which is broken and disadvantages disabled people and their families?
Please feel free to pass Hot Issues on to others. We welcome feedback and ideas for topics.
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