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Common themes as groups respond to Ministry consultation on payments to family carers

Disappointment at lack of sound principles contained in policy options – November 2012

The Ministry of Health’s consultation on payments to family carers has now closed and decisions will be made over the next few months. Wide ranging discussions took place among support groups during the consultation period and there was widespread concern at themes contained in the Ministry’s document.

NZORD is concerned that the Ministry’s defeat on this issue at the Human Rights Review Tribunal, and in two major court cases, has negatively influenced the policy direction they are signalling, and even suggests an attempt to relitigate the case through the policy setting process. This is very disappointing. Family carers deserve a more respectful process that is based on sound principles. Here’s the submission made by NZORD:

Preamble:

NZORD has participated with numerous other groups in discussing this issue in detail and has contributed to the submission from the NZ Carers Alliance. We support that submission, and in addition we offer these additional comments which focus on some particular issues and offer some further comment on principles that we urge the Ministry to consider for incorporation into the carer payment policy.

We urge the Ministry to note that in some cases family carers will be also providing essential health, medical and nursing care to disabled family members, and the heading of the document referring to disability support alone, may be too narrow a view of the reality, and too limiting in its scope. The policy should allow for recognition of functions like medication management and medical procedures as part of some family care situations.

Question 1 – Regarding the protection of the disabled person’s interests and quality of life.

  • NZORD urges the Ministry to explicitly note that there are no special provisions aimed at this particular outcome where unpaid care has been provided by families in many situations over many years, and to consider carefully why it thinks this situation should change when family members are being paid.
  • We consider no such change is warranted. There does not appear to be any logical explanation of why any new requirements should apply in such circumstances, solely because of payment to the family carer.
  • We believe the principles, reflected in current practice, of trusting families to do what is best for their family members, of having very limited interference by the state within households, of having existing thresholds for interventions where there may be concerns about welfare or wellbeing, are adequate ways of ensuring protection of the disabled person’s interests and quality of life.
  • Further, we consider that external audits would be wholly inappropriate in a family situation, except when a suitable threshold has been met to generate action over any concern, such that police or welfare intervention could be considered. However we consider it is appropriate that when the level of paid care is being assessed, that an evaluation tool could be used by the assessing agency to identify any points of possible concern about safety and wellbeing, just as can occur in various other care situations, and the regular review of support needs that would doubtless occur, would be an suitable opportunity for review of safety and wellbeing, just as it can be at present in those other situations.
  • Finally, on this particular question, we suggest that the appropriate starting point in a policy about payment to carers for the support they provide to disabled family members, is that this policy is primarily about the carer and their needs.

Question 2 – On the targeting of eligibility for payment.

  • NZORD believes this should follow the same principles currently applied to many other forms of state assistance in health, disability and social support programmes. That is, that entry criteria would be established, consistent with  those that apply to paid care by external agencies, and these criteria when adapted for the family context, should be applied in a non-discriminatory way.

Question 3 – Benefits and issues of a targeted approach.

  • Consistent with other health, disability and social programmes, priority would go to those with the highest need, and there should be eligibility or entry criteria to determine funded support, in a similar way as applies to funding of support from providers.
  • Criteria for family care payment should take into account the safety of the person cared for, the support needed for essential daily personal and medical care, and the goals of inclusion, independence and participation in society.
  • Implicit in this approach is different levels of payment according to the quantity and complexity of care provided.

Question 4 – Circumstances to be paid through targeting.

  • We believe that existing criteria for targeting paid support to those with high and complex needs, and to those where safety and wellbeing issues are identified, are a principled approach that can be appropriately applied to family care situations.
  • We believe the first two circumstances mentioned, remoteness and cultural/religious requirements, would fit well with the principle of choice for the disabled person and their family, which is another important principle increasingly being applied in disability policy.

Question 5 – Methods of payment.

  • NZORD firmly believes that this question should not be a either/or option. There are many potential complications in either track, such as income from wages abating benefits so little extra income is actually received, or an allowance attached to the benefit system possibly not adequately recognising the level of support provided.
  • Other payment options should also be considered, such as a tax credit type payment that is neither income tested for those in the paid workforce, nor has any negative impact on benefit payments to those in the welfare system.
  • There are many potential complications in the payment area. A bottom line should be flexibility in method of payment so there is no disadvantage directly resulting from a method chosen.
  • NZORD notes that the potential complications need careful scrutiny and consideration and the Ministry is urged to set up a working party that includes carer interests and other expert advice, to consider the detail and make recommendations that avoid disadvantage. We note that tax changes invariably involve working parties to consider their impact and consequences. Family carers should have the benefit of similar detailed analysis of plusses and minuses.

Questions 6 and 7 – Method of payment. Employment or allowance.

  • Our response to these two questions is answered in Q5 above, where we address a number of possible complexities and urge careful ongoing scrutiny of those issues.

Question 8 – what should family carers be paid for?

  • NZORD considers that most of the issues proposed in this section are not principles at all. Rather, they are methods of cost minimisation or cost containment.
  • A robust and defensible principles-based approach would consider issues such as non-discrimination, thresholds for eligibility, targeting of support to the highest need, targeting for safety, wellbeing and complexity of care, and would maintain choice for the disabled person and the carer.
  • In particular, any suggestion of an amount of care to be “expected to provide unpaid” is discriminatory and offensive.
  • The “age and stage” criteria could be a useful principle to apply as long as it is done in a non-discriminatory way.
  • A principle to also be applied should be that some families may choose to provide the care without an expectation of payment, but none should be expected to do so.

Questions 9, 10 and 11 – Determining unpaid support.

  • Our view is that it has always been a choice for families to provide unpaid support and will always be in the future, as payment will only occur by application. We find the implied message, of pressure on families to accept a duty to provide unpaid care, to be inappropriate and offensive. We urge a rethink of the approach indicated in the document.
  • NZORD believes the establishment of a base threshold, consistent with eligibility for paid care by providers, would be a fair and non-discriminatory way to ensure payment was not allocated inappropriately to minor and incidental support activities.

Questions 12 and 13 – Principles to be applied and number of hours unpaid.

  • Our response to this question reflects answers given above. That is, the issues raised are mostly not principles. If the principles we have outlined in this response were applied, reasonable cost containment and appropriate targeting of support could be achieved without the punitive and offensive approach implicated in the discussion document.

Questions 14 and 15 – A new family carers payment.

  • As indicated above, we believe there are a range of possible payment options that could be considered, and this option seems to fit our identification of an alternative to the two options outlined in Question 5. However there is a lack of clarity in the consultation document as to the implications of this method or of the other two alternatives.
  • We are aware some carers and submitter may be expressing preferences for various payment methods, but we are concerned about lack of appreciation of detailed implications and consequences of the method chosen.
  • We reinforce our suggestion that the details needs to be explored and all the plusses and minuses thoroughly canvassed before any final decision is made, despite the likely need for the Ministry to progress an interim solution by May 2013.

Question 16 – Hard choices.

  • NZORD considers that targeting support to the highest needs is the principled way to ensure the best use of available resources.
  • However we consider parts of this question to be inappropriate and offensive. We have never seen any other consultation document in the health or disability sector that has posed questions that offer one gain, at the loss of other important services or rights.
  • Such an approach in offering, for example, improved cancer detection and treatment services at the expense of dental treatment for poor kids in the Far North, would be roundly condemned as completely unacceptable in our society.
  • We consider this question, as posed, to be beneath the dignity of the Ministry, and indicative of an inappropriate and divisive approach.
  • We encourage the Ministry to rethink the themes inherent in this document as it forms the policy on payments to family carers. It is apparent that the Ministry may be frustrated at losing the case before the Tribunal and the Courts, and be attempting to relitigate the case through this consultation. We strongly encourage the Ministry to back away from any punitive response and adopt a principled and non-discriminatory policy that is consistent with established best practices in many other parts of the health and disability system.

Thank you for the opportunity to submit on this important issue.

Yours sincerely,

John Forman
Executive Director