New Zealand Public Health and Disability Amendment Bill (No 2)

I move, That the New Zealand Public Health and Disability Amendment Bill (No 2) be now read a first time. It is the Government’s intention that this legislation should pass through all stages today. The New Zealand Public Health and Disability Amendment Bill (No 2) is the Government’s solution to the decisions made by the High Court and the Court of Appeal in relation to Ministry of Health v Atkinson and Others. This is a compassionate and responsible solution. It does shift the boundary between family and taxpayer responsibilities, but it has landed in a fair and reasonable place. The Ministry of Health advises that New Zealand will be only the third country in the world, after Sweden and the Netherlands, that will pay a wage to some family members caring for other family members.

For over 20 years, under Governments of all hues, the Ministry of Health has operated a blanket policy of not paying family members for the support they provide to disabled family members receiving disability support services. Support by Governments has consistently been based on the principle that families have primary responsibility for the well-being of each other within their family. Care and support provided by family members to their loved ones are part of that responsibility, and are provided out of love and affection and not for money. The Government’s primary role in this regard is to support families in their role. That is why public funding for care and support is targeted to meet the needs that families are unable to meet.

The Atkinson court case raised issues that went to the heart of the relative obligations of families and the Government, and the degree of responsibility that family members in different situations have for each other. The court in the Atkinson case found that the Ministry of Health, under all Governments, had a policy on disability support funding that was unjustifiably discriminating against parents caring for adult disabled children. This bill takes account of the court’s decision and clarifies the Government’s position on paying family carers. The bill provides certainty without the further need to resort to the courts on individual cases, and it manages the significant financial risks for the Government. This approach balances the interests of disabled people, family carers, and taxpayers, in challenging fiscal times.

The Government provides over $1 billion each year to fund support services for over 30,000 disabled people. The majority of these people are supported by family members in some way, and the Government recognises the crucial role that families play in supporting and maintaining the well-being of disabled people in our nation. It is—and it remains—a fundamental tenet of Government-funded support services that, generally, families have prime responsibility for the well-being of their members, but, clearly, change is needed. In some circumstances, providing ongoing support for people with lifelong disabilities can place an unreasonable demand on families. In particular, the situation of family members supporting adults with lifelong disabilities is an extraordinary circumstance involving a burden of care beyond that ordinarily required or obliged of family members.

In consulting the disability and family carer communities on the issue of paying family carers, submitters told the Ministry of Health that if prioritisation is required, the priority should be on disabled people with the highest needs. Support should be given to those families who need it most, and submitters wanted some flexibility to deal with individual circumstances in their best interests. The Government recognises that changing the policy to pay all categories of family carers would result in unmanageable fiscal costs to the Crown. In considering targeting, the Government decided that the fairest way of managing these risks was to provide support to those people who need it most. The bill reflects this community feedback. It allows and supports a pragmatic and compassionate solution to a difficult situation facing family carers. It amends the New Zealand Public Health and Disability Act to enable the Crown, through the Ministry of Health or a district health board, to adopt policies and make payments to family carers of specified disabled family members.

The bill provides for clarity about which support services are provided and under which specified circumstances. The approach recognises that the Government’s responsibility is to support families in their caring role. The policy cannot support all groups. This means people will not generally be paid to provide health or disability support services to their family members. This is particularly so for those parents who care for their non-adult children, and for spouses who care for each other. The societal expectations and responsibilities for care in these situations are substantially different from those of parents who care for their disabled adult sons and daughters. The bill will allow the Ministry of Health to introduce a new policy of paying parents and resident family members other than spouses to provide disability supports to disabled adults aged 18 and over in high and very high need situations.

The bill is a significant change in that eligible disabled people will now have the choice of employing a family member to provide them with support at home. This approach is consistent with the Government’s overall direction for disabled people to have more choice and control in their everyday lives. The Government in this Budget has committed $92 million over 4 years to implement this policy. The Ministry of Health will allocate funding to adult disabled people in high and very high need situations who wish to employ their parents or resident family members to provide personal care and household management supports they have been assessed as needing. There will be some flexibility within the policy to consider disabled people in particular circumstances who do not meet the eligibility criteria but where payment is clearly desirable. An example might be disabled people living in remote rural areas where alternative care is not available.

The new family care policy does not affect the existing arrangements for those non-family members who have always been able to be paid to provide home support for a disabled family member who does not live with them. The Ministry of Health also provides the carer support subsidy, totalling $34 million per annum, to unpaid full-time carers to reimburse some of the costs of bringing in another support person to give the main carer a break from their caring roles. In addition, the Ministry funds respite services of $17 million per annum to support short-term breaks for full-time family carers. The Ministry of Social Development does provide income support to the vast majority of those disabled people being cared for as adults.

The Crown has acted in good faith to respond to the court’s decisions. We have carefully balanced providing the best supports for those families with the greatest need, while being responsible with limited taxpayers’ funds. We have landed in a fair place. The bill clarifies the Government’s position on paying family carers and provides certainty without the need to resort to the courts on individual cases. The bill provides flexibility to implement and modify policies on paying family carers in the future. This issue has challenged Governments of all parties for 20 years. As recently as April 2008 the previous Government rejected paying family carers.

This bill meets three central issues. The first is the need for each disabled person to receive the most appropriate care to enable a good life. The second is to recognise the extraordinary work done by family members in many hundreds of homes caring for family members with very high or high needs. The third is for support to be fiscally affordable for our country. I am pleased to be able to present this bill today, and I commend the bill to the House.

Can I begin by acknowledging the families who took the human rights discrimination proceedings that have eventuated in this legislation coming in, and acknowledge how traumatic it is for people to have to expose their personal lives in order to get justice. They did that, and they are now being responded to by this legislation.

It is a puzzle to me why we are ramming the New Zealand Public Health and Disability Amendment Bill (No 2) through all stages under urgency, because the payments do not come into effect until October of this year. There does not seem to be any need for urgency given that. The Minister of Health quite incorrectly stated that this is a major breakthrough and that this is the first time that there will be family caregiver policies, but in his very legislation it specifically says: “the Crown and any DHB are, and have always been, authorised to adopt or have a family care policy and to change, cancel, or replace such a policy.” That is in the Minister’s legislation that we are debating right now. So there is already the ability for the Crown and any district health board to authorise a family care payment, and they have in many instances. What the Minister has created is a new threshold for family care payment, which will actually restrict the right of access of some who already meet the criteria.

Some families who, for example, are in very isolated parts of our country—and in New Zealand we have a large number—and for whom it is very difficult to get a stable, qualified, appropriate caregiver, have been able to get a family carer paid for to provide the support services that a disabled person needs. This new policy, by saying that the family caregiver payment will be limited to those with high and very high needs—in fact, it specifies that there will be only 1,600 such people entitled to receive a payment—may well, by the implication that the legislation is overriding existing policy, limit the ability of district health boards and the Ministry of Health to be responsive to families’ needs and to pay family caregivers as they currently are able to do under existing criteria.

I am concerned that in the rush for this legislation, some of those “devil in the detail” points may well cause unintended consequences that mean that some families will be worse off than they currently are. I doubt very much that that was the intention of the Minister, and I certainly doubt that it is the intention of any of the National caucus members, despite what they are doing in housing. I am sure that none of them is intending that families will be worse off as a result of this legislation, but with the very narrow criteria, that is certainly a possibility.

The other significant concern I have is that in this legislation it specifically says that the legislation “stops claims of unlawful discrimination being made concerning any care policy,”. This stops future claims being made except for “any claim that arises out of a complaint that was lodged with the Human Rights Commission before 16 May 2013.” What is the date today? We know that in Parliament it is 16 May, but in the real world, where complaints are laid, it is actually 17 May. So we are passing legislation that stops any future claim being made. That means that parents who are providing care currently and who are anticipating, because of the Minister’s bold announcement that family caregivers would finally be paid, that this would solve their problem will now have the detail of the criteria that only very high needs or complex needs disabled people qualify for this family caregiver payment. Today they will learn that they do not meet the criteria for family carer payment, and, what is more, that they are being stopped from laying a complaint with the Human Rights Commission about discrimination.

This legislation says: “A claim that arises out of such a complaint may proceed, but the remedy that may be granted is restricted to a declaration that the policy is inconsistent with NZBORA:”—the New Zealand Bill of Rights Act. So the Minister is not only significantly limiting the criteria for payment for family caregivers but also saying that anyone who misses out, who does not meet those criteria, will not be allowed to take a complaint to the Human Rights Commission unless they are expecting just a note saying that their complaint is justified because the policy is inconsistent with the New Zealand Bill of Rights Act.

That is a significant move that this Parliament is proposing to take, and not at a normal pace. The Government is ramming the legislation through all stages under urgency and extinguishing people’s right to challenge the policy of the Government. I am puzzled by that. It is the only reason that I can conclude for the Minister deciding to take this legislation through all stages under urgency. There is nothing urgent about it. As he quite rightly pointed out, this issue has been around and unresolved satisfactorily for a very long time. The policy decision to determine whether a family responsibility extends to caring significantly for adult disabled family members is a big and complex call and this side of the House has made numerous written offers to the Minister of Health to try to adopt an agreed position so that we could have a parliamentary agreement on such a policy rather than something that appears out of nowhere and is then rammed through all stages under urgency. In my view that is not the way to deal with a significant and sensitive issue—an issue that affects thousands of New Zealanders and one that is hard to take a sensible call on.

I think the Minister has got it wrong and I think the Atkinson family, who were the instigators of this legal action and who are being responded to, might think that as well, because although they will be compensated for their care under this policy, albeit by agreement and not specifically under the legislation, had they applied next week, they would not meet the criteria. They have won their case. It has been to the High Court and the Court of Appeal. They have won it through New Zealand’s legal system, but under the criteria that the Minister Tony Ryall has currently laid out in this legislation, that family would not meet the criteria. Families like the Atkinsons all around the country will have heard about this legislation and think: “Thank goodness, our issues are finally sorted and resolved.” When they learn the detail of the legislation, they will be puzzled.

It is a bit of a contradiction, this legislation. It responds to the court case. The Minister trumpets it as being the first ever resolution of the issue of family carers being paid. He is wrong. In the legislation itself it spells out the fact that there is, and has always been, the ability of the Crown or a district health board to determine, under whatever criteria they wish to, that family caregivers can be paid—and many are around the country. What this legislation does is now set a very high level, a very high threshold, for meeting those criteria. My concern is that it may very well exclude some families who are currently getting paid. If the Minister in the Committee stage wants to introduce a Supplementary Order Paper that clarifies that this will not extinguish any existing rights that families who meet the current criteria for being paid as family caregivers have, I think that would certainly resolve that situation.

This is a disappointing step because it is not as courageous as it could have been. It was not introduced with any discussion with other parties that I am aware of, except those needed to get this bill across with a majority. I think this issue is bigger than just a parliamentary majority. I think it has been around for so long that across-party support would have very appropriate.

The final concluding comment I want to make is my disappointment that this family caregiver payment specifically excludes spouses. In many relationships spouses are the appropriate people to provide care, and in my view that is not a matter that Parliament should intervene in. That is a matter for the families themselves to determine.

Thank you for the privilege to speak on this New Zealand Public Health and Disability Amendment Bill (No 2). This morning a prominent disability spokesperson said the sector will be relieved that a resolution has been arrived at. The bill, indeed, does respond to the Court of Appeal’s decision in Ministry of Health v Atkinson and Others and it does create a fair policy to pay for family members who care for their adult disabled children.

It is very important to emphasise that this has been about since 2001, since the Human Rights Commission first ruled. That, of course, was at the time of the Labour-Green Government. In 2002, I must say, the Hon Ruth Dyson did speak about paying carers in limited circumstances. In 2005 the Office for Disability Issues on its website said a family carer’s payment would raise ethical issues, such as monitoring the care quality and the impact on family relationships if one member became a service provider and another the client.

Then in 2008 Ruth Dyson in her Carers’ Strategy “later included the idea of a carer’s payment to some carers, limited of adults.” What I do also note is that this was never responded to by the Labour-Green Government at any stage, with any payment whatsoever; in fact, it was not prepared to do so. So during that whole time the Labour-Green Government did nothing, even though the Human Rights Commission had ruled as early as 2001. I think it is very important that this debate is taken in the context of the history that I have just gone over.

This is the National Government’s solution to the court challenge, and it did come after extensive consultation with the sector in 2012, where a large number of submitters responded and where there were a wide number of meetings throughout New Zealand to ensure that the disability sector was well informed of the complex issues associated with this challenging issue. Indeed, it does shift the boundary between family and taxpayer responsibility. In the New Zealand context we have had a situation whereby families have not been paid for looking after fellow family members for many decades. The solution we have arrived at is indeed a very fair place. We recognise the importance of families in providing care and support to their adult disabled family members. This, of course, does mean that there is always a delicate balance. There is no doubt that there will always be a grey zone in terms of what persons have extensive disabilities, and that has to be judged on an individual basis. One will never be able to have the fiscal ability to pay for all.

I think the Attorney-General came up with a very well-thought-out report when he made his statement. It included the fact that the objective of the bill is to ensure that the Government does not incur unmanageable fiscal cost as a result of the decisions. We will have the Green Party, of course, wanting to print money. That is how unrealistic it is and how unrealistic it would be. It is important that that very well-written report of the Attorney-General is also taken into context.

This is a significant investment in family care and gives choice and control to more disabled people and their families in the support they receive. It amounts to $92 million over 4 years to pay some family members who care for their disabled adult children. Funding will now be available for about 1,600 disabled people with high or very high needs to pay some family members to provide care.

This is something that could have been resolved under a Labour-Green Government. Over a period of 8 or 9 years it failed to do so. I am very pleased to be able to say that the National Government is at last resolving this. In my view, it would be hugely helpful if the Labour Party supported this bill, otherwise it might be accused of providing a response that perhaps we could apply that word to that we are not allowed to say in this House; it is known as the “h” word.

Tēnā koe, Mr Assistant Speaker. Can I begin by saying to Dr Paul Hutchison that it is 5 years that this Government has been in place. If this was so easy to resolve, why was it not resolved in the first year of a National Government? Maybe it was because the whole issue, actually, was before the courts and could not be resolved in that time frame. He also said that the sector would be relieved. Well, I have to say that that is not the feedback that is coming from this sector. People in the sector are bemused. They feel misled, and, actually, they are shocked. But they ought not to be, because if they go back and they read what Mr Ryall has been saying over a number of years, they would know that the bottom line for him has always been cost and not care. It has always been cost and not care. Of course there must be restriction on costs in the health sector. It has always been the case. But he has consistently made it clear that he does not agree with adult disabled children being cared for by their families. If you go back to statements that he made in September 2012, he was part of the scaremongering that it was going to cost $400 million, and that really brought out some of those who have to care for families.

I draw to your attention Mr Cliff Robinson, a parent from Thames who is caring for two adult disabled children. He said: “This is just scaremongering on the minister’s part. And also, to even think about means testing people who [are] disabled … just horrifies me.” I think what it has really shown is the lack of understanding about what is involved in caring for disabled children. Members opposite can laugh about it, but have they actually met constituents? And I would have thought Dr Hutchison has. I will never forget a woman coming into my office carrying her adult child. Her adult child was now 22 years of age and had left the education system, and no longer had support. This woman, who was a highly qualified woman, had given up her job to care for her highly disabled child, and it was a huge impost on this family.

You know, it is not that long ago when places like Kimberley Hospital and Training Centre flourished in New Zealand, where we took our disabled family members and we put them into institutions and we closed the door, and we said it was the State’s total responsibility to look after those family members. But over time we became more informed and we became more compassionate about what could be done with a disabled person. They were not non-people; they were people, people with feelings and people with needs. So over time, and rightly so, we shifted much of the care of our disabled people into the community, and many families have picked up that role. They have given up jobs, they have given up income, and they have looked after their family members.

So Paul Hutchison, when he says the Labour Government did absolutely nothing about it, is being disingenuous. As he will know, firstly, it was before the courts, and, secondly, if he just read the legislation his own Minister has put in, the New Zealand Public Health and Disability Amendment Bill (No 2)—I suggest he reads new section 70D, which says: “The Crown and any DHB are, and have always been, authorised—(a) to adopt or to have a family care policy:”, and to change, cancel, or replace such a policy.

My real concern about this bill is that here we are, at 10 o’clock in the morning, and last night the regulatory impact statement on this bill was not available, as they were not available, either, for the housing bills. We are told to go and look them up on the internet—and I am sure Maurice Williamson will understand this. We are told to go to “www.hashthishashthat.”, and to look it up, find the regulatory impact statement, run it off, read it—not there. It had not been put up. So the regulatory impact statement on this bill was first provided this morning to this House, and we are now required to make decisions on this bill under urgency and pass every stage of it. I have to say to those listening that this is a dreadful process. The fair-minded people of the National Government know that this is a shonky process under which to put through any bill that affects so many important families looking after disabled family members. Why is it being put through with such haste? It does not come into effect until October 2013. Can members opposite count how many months away that is? Could it not have gone to a select committee for a while?

I mean, I was even interested in the consultation group the Government set up to look at what changes it would make—the task force. Well, I notice the task force did not have a person with disability on it. I do not suppose they are capable of being on a task force in the minds of this Government. So there has been insufficient time, and a lack of consultation. We asked last year, as I know other parties in this House have done, for a cross-party approach, to get an agreement between parties on this very, very complex issue. I say to Dr Hutchison that Tony Ryall said how complex it is, so to just throw out there “Oh, Labour did nothing about it.” is to disregard how complex it is. But we offered a cross-party consultation on this, and were we consulted? We got a bill today and we got some information on it half an hour ago. That is called consultation and cross-party support in this House. It is just not good enough.

And I want those members there to have a look—I cannot see any of them with the regulatory impact statement. What they will have are their research party notes, all saying the same thing. Go and have a look at the regulatory impact statement. I have never seen a regulatory impact statement anything like this one. Have a look at it. This is the regulatory impact statement. Have a look at where you are meant to be finding out what is going on in this bill. This is what it looks like. It is full of blanks where we are not allowed to know much about what this bill does. They have cut out nearly all the information that would be meaningful. I particularly like page 27. Let me show you page 27. This is page 27 of the regulatory impact statement, and what does it say? It says: “Blank blankety-blank-blank blank-blank blank blankety-blank blank-blank-blank.” That is the regulatory impact statement on this really important bill. Hang your heads in shame, National members. That is what we are supposed to make decisions on in this Parliament.

When I did find some words that I could read in the regulatory impact statement, it put up a number of options from the Ministry of Health. One of them was that we actually should pay around $16 an hour. That is what it says in the regulatory impact statement—the little bit that is written. It says it ought to be the minimum wage, plus other payments that would bring it up to around $16 an hour. What does this bill do? What does the Minister do? He says that the minimum that can be paid is $13 an hour—$13.75. Well, how generous—$13.75! They are to be paid less than other caregivers in our community. I have to say that this is not a breakthrough; this is all about trying to restrict what the Government will pay to people. It will restrict whom it goes to and who will be paid.

And I believe that National has done very little in terms of trying to get a cross-party agreement, or an agreement with the very people who are affected who look after their family members day after day. I acknowledge that it is complex, but why would we not in this Parliament at least allow the public to have a say? I know why the Government does not want the public to have a say. It is because the public are more in tune and more empathetic to those who care for disabled adult children than the Government is, and it does not want that exposed at a select committee. I have been on those select committees where the National Party members hear submitters and say “Thank you very much for that wonderful submission. We really appreciate receiving that wonderful submission you have spent so much time writing for us.”, and then vote against every recommendation the public make. So the Government knows there would be people coming and saying “Hang on a minute. This is not what we thought you were going to do. This hasn’t been worked through with us.”, and it does not want that to be exposed to the public of New Zealand.

This is insufficient time. This whole Parliament ought to tell the Minister to take it back, to give us time to work across the parties on it, and to bring in a bill, put it to a select committee, and you could still have it passed by 13 October 2013. That is what ought to happen, and that will be our very strong argument today. It is not good enough. It is disgraceful to bring in a bill and to hand us this sort of rubbish, saying this is what the bill is about.

Tēnā koe, Mr Assistant Speaker. Tēnā koutou katoa. I would just like to acknowledge the families. Thank you, all of the families who have worked with me on this issue. Thank you, all of the families who could get no help from any other MP on this issue. Thank you for coming to Parliament last term, when I held a forum to talk about this and no MP except the Greens would come to the forum. I do not feel like my head should be down today, but I think everyone else’s should be, because, complex or not, this is a job. This is whom we are here to represent. These are the vulnerable people in our society who look to us for leadership, and after 12 years of going to court to prove discrimination, what has happened is that a bill, the New Zealand Public Health and Disability Amendment Bill (No 2), has been brought forward that will discriminate legally. I will take you through how; I have a lot to say.

No. 1, this legislation discriminates against family carers, who are allowed to be paid lower rates for the same work. The principle of the Ministry of Health v Atkinson court case was recognising that it was discrimination, and now this bill entrenches the fact that they can be paid less for doing the same work as other people. That is a new discrimination. It discriminates against carers of family members who are eligible for disability support in categories 1, 2, and 3—i.e., mild to moderate needs. It denies those disabled people choices over their carer, and is contrary to the United Nations Convention on the Rights of Persons with Disabilities and the Disability Strategy. It legitimises discrimination against family members under 18 and against spouses.

💬 Ian McKelvie: It does not.

It literally says that spouses cannot be included, even if they are doing the same work as other family members. And when we are talking about work, this is 24/7 work. I am a friend of Cliff Robinson in the Coromandel, and he has two adult children he cares for 24/7. I know all the people in the court case, and I know the people who are not in the court case, who will be excluded in this bill, and they are absolutely disgusted with this outcome.

It also discriminates against 45 people who complained to the Human Rights Commission but whose cases have not yet been accepted. Now they cannot be accepted, because the Government has locked them out of any form of complaint, any form of remedy. People’s future access to courts and the Human Rights Review Tribunal has been locked out. They cannot even challenge, beyond a declaration that the Act is a breach. The Government does not want to ever have to justify its discrimination in front of a court again. This is vengeance because it failed in court after court after court for 12 years. This is vindictive and unfair, and, what is more, it is setting up a new level of complexity, and these people have been through enough. Sometimes people’s hopes are broken by life, and sometimes by legislation, and this is one of those times. The Government has lost in several courts of law, so now it is making sure it limits the opportunity of whom disabled people can choose to be cared by. It has done it because it was beaten in the Human Rights Review Tribunal, in the Court of Appeal, and in the High Court. Now it is making a law that is actually, as the Attorney-General said, a breach of the New Zealand Bill of Rights Act, and it discriminates right back at them.

Of course, you would think that these are the greedy, who are trying to get lots of money for doing that easy job of looking after a seriously disabled family member 24/7. But, in fact, what happens is that these people are already doing the 24/7 job, and we have managed to exploit them for years. It is a cheap option, and this law is a cheap option because it is capped; I will go into that in a minute. But I do not know that people understand what happens in these homes. Unskilled carers on low wages, who can now be paid more than these people, come to the home, and the family member has to teach them how to care for the family member whom they are caring for for nothing. This is an endless series of discriminations against the people with disabilities and their families, who want to be respected. These parents cannot go to work, because they are so busy teaching the carers how to care for a severely disabled family member, and now there is a big cap on who can actually get remunerated. The Government has said quite clearly and blatantly in the bill: “We don’t like this. We don’t want to do it. We think families should naturally want to give up their lives 24/7 for severely disabled members. We think that’s fine. That’s not discrimination.” But, hey, the Government lost, so it has to do something and this is how it makes sure it protects itself from spending too much money.

The bill explicitly states that no one can complain on the grounds of discrimination. What other bill does that? No one can complain to the Human Rights Review Tribunal or the courts on the basis of being discriminated against. So if they miss out on the $92,000 over 3 years, which is highly likely for a number of families, they have no redress—none whatsoever. The Budget provides $92,000 over 3 years so that 1,600 families might, if they can prove it to the Ministry of Health, get a family member to be paid to care for a disabled family member. This amounts to $14,375 per year. Is that a wage? It is a pittance. It is less than what carers get, but that was always the plan. The plan was, when the ministry lost in court—they kept throwing public money at the case and lost many times—the Government was going to make sure that whoever got paid, got paid a small amount, which is $14,000 a year for the 1,600 families who are lucky enough to get into the scheme. You cannot—sorry, not you, Mr Assistant Speaker, although I am sure you would have a view—

The ASSISTANT SPEAKER (H V Ross Robertson): I hope so.

It cannot be called—it cannot be called—a resolution or a solution.

Let us summarise what is wrong with the bill. It is discriminatory against people who complain to the Human Rights Commission. It entrenches the concept that family members who do the care work are not working. Twenty-five years ago Marilyn Waring wrote a book called Counting for Nothing. It was about the work that does not get valued in our society—the backs of the people we run off. That is what she was talking about 25 years ago, and this is what is being entrenched in law today: that these people are not working. The adult mother in Christchurch who has an adult son who is violent, who has to wash his bottom—she tells me these stories on a regular basis—cannot be paid. She is in dire poverty and nobody except me has ever talked to her about this. She said that she cannot be paid and that her carers who come in because her son is violent will now be paid more than her, if she can prove that she has got a right to be paid at all. It is outrageous, as Sue Kedgley once used to say on a regular basis.

However, it gives all the power to the Ministry of Health and the district health board, rather than setting up a newer and fairer framework to negotiate a payment. We have always said this was a complex issue and we have always said we should not walk away and that there should be a cross-party approach. That is why I held the forum. I was hoping that some people would take an interest in this and that some people would have the guts and the courage, in this House, to actually engage with these families—

The ASSISTANT SPEAKER (H V Ross Robertson): Order! Order!

Sorry—would have the stomach, puku. Is that better? Courage might be a word. Courage, fortitude, anything—I think the families would accept any of those words. That is whom I am trying to speak for here today.

The bill caps the fund so that those people who are not accepted by the district health board or the ministry will not get it. Once they have spent that $14,000 per family, everyone else will miss out. It is a rubbish process. The consultation from the start was awful, and the options that were put up were absolutely awful, and the idea that “natural care” could be defined in the way Governments have always defined it is awful, and the idea that millions of families and millions of individuals want to apply for this money is ludicrous. It is a hard job. You talk to Cliff. You talk to Vicky. You talk to Gillian. You talk to the families. Is it an easy job? I could not do it. I actually could not do it. I really could not. It is a really tough job.

So let us have a look at the bill in detail. It has got lots of interesting words in it, lots of doublespeak, but it is based on the fundamental tenet that the Government’s primary role is to support families, and it will not acknowledge the way in which those families actually live. It will not acknowledge that. The real agenda is in the next line, which says “We must protect ourselves from unmanageable fiscal costs.”, and the Government has certainly done that. It has done a very, very good job of protecting itself, but I thought we were here to protect the people, the most vulnerable people in our society. The definition of a civilised society is one that protects the most vulnerable. These people have been to court for 12 years on behalf of others who are now in a very, very difficult position because if they have not lodged, and if they do not get accepted, there will be no right of redress. There will be no right to complain.

So I think we are seeing a very sad day in the House today—a very sad day—because I know that at a select committee many families would have told their stories and I am sure that people would have listened. I am sure that people on all sides of the House would have been interested. I have more to say. We do not support this bill.

It is a pleasure to rise and speak on the New Zealand Health and Disability Amendment Bill (No 2) at this stage. I want to congratulate the Hon Tony Ryall, who clearly is one of the best health Ministers the country has ever seen. And the more that our opponents on the other side bay about that, the sillier they look, actually, because competence shows through. I just want to congratulate him on finally getting to the point where compassion is being shown for these people.

I want to raise a couple of points that were debated earlier by the Hon Annette King about some of the process, if you like. Can we just go back a little bit in time and look at who the health Minister was at the time that the Human Rights Commission court appeal was first promoted or first suggested. Who was the Minister?

💬 Hon Annette King: Not me.

Look, I understand that the honourable member herself was the health Minister at that time. What did she instruct the ministry to do? What did she instruct the ministry to do? She instructed the ministry to fight this in the court: “Do not allow this to proceed. Fight this tooth and nail. Do not allow it to progress”. She also suggested—and I understand there is a Cabinet minute to back this up—“Do not consult with the public or even with the rest of the rest of the Parliament. Do not consult with anyone. In fact, make sure that this is kept below the radar.” How does that square with what she just said earlier on about the process that is happening right now? How does that square with that? You know, there is a word—I understand that if you use it against a member, it is unparliamentary, but if you use it against a situation, it is not.

This Government is now proposing to inject $92 million over 4 years into helping these unfortunate families. We all have personal cases. To listen to Catherine Delahunty you would think she is the only one in this Parliament who has ever encountered one of these unfortunate people. Actually, within my own family, very close to us, we have an affected person or persons, so very much we understand individually, as constituent MPs, the circumstances that some of these families find themselves in. I would suggest to that member that she does not have a franchise on compassion in this regard.

This is an excellent move on the part of the Government. This is an excellent piece of legislation and I look forward to its passage through the House.

I rise on behalf of New Zealand First to speak to the New Zealand Public Health and Disability Amendment Bill (No 2). Unfortunately on this occasion we are going to oppose this bill. This bill is a real contradiction in terms. There were some positive aspects. When we looked at the $92 million we thought that at last some money was going to be made available for these families. But when we read further, the negative connotations overwhelm the positive aspects. When we have a look at the amount, $92 million for 4 years, it is only a drop in the bucket. It is $92 million, over 4 years, to pay carers to look after their own disabled family members, and it cannot be a family member or a spouse if they are going to get paid.

We all know that this is a response to the family carers case that was ruled upon by the Human Rights Review Tribunal, the High Court, and then the Court of Appeal. Today’s Dominion Post said that this was a half-baked scheme, particularly when you cannot employ a family member or a spouse to look after the disabled person. When we look at it, the facts are that there are approximately 1,600 disabled people with high and very high needs who will be funded by this proposal.

So we have $92 million, over 4 years, which works out to $23 million a year. If we divide that $23 million a year by the number of people requiring a carer, the amount that they will be paid works out to be a real pittance—$14,000 per person, per year. It is really a pitiful amount of money to provide for these people, who are protecting our country’s most vulnerable people. I know of many families who will not allow another family member to provide for or care for their family member. They are happy to do it themselves, but they would not be happy for someone else to care so intimately for these people. Of course, this is not even recognised in this legislation. Family carers provide a great service to New Zealand. Their love, their compassion, their tireless caring, their sweat, and their tears nurture these people, our fellow New Zealanders. They are very compassionate, they are caring, and they are working in an extremely demanding role, one that most of us could not do, day after day after day.

If the National members do not value and appreciate that work, basically they should say so. We know that disabled New Zealanders do not receive enough support in our country. There is not nearly enough financial, emotional, and professional encouragement for disabled people to integrate into a normal, more independent life. There have been reports of disabled people not receiving sufficient support even in the area of speech therapy, which would really help their integration into society and help their self-esteem as well. What many people fail to realise is that carers need time out, too. It is really tiring caring for a disabled person, yet, if a parental carer needs time out, in many cases they need to apply for a domestic purposes allowance. We are making these people—our people—jump over all sorts of hurdles just to make ends meet, while expecting them to support our most vulnerable.

Carers are a great group of people. I know of one family where the father works at home during the day so the mother can sleep because she works at night to bring in the extra money to try to make ends meet. These people are really struggling to try to keep their loved ones at home. On behalf of New Zealand First I have to acknowledge Mr Atkinson and the others who have fought long and hard to receive any funding, and recognise their efforts, their endeavours, and the sacrifices they have made for their families. We know that this measure proposed by the Government is totally inadequate. It is definitely not enough. We cannot understand either—

The ASSISTANT SPEAKER (H V Ross Robertson): Order! Members, there is too much background noise. It is discourteous to the member speaking.

—why this bill is going through under urgency. There will be no public submissions and no other opportunities for the public to have any input into this particular bill. It is disappointing. Again, we see the focus of this Government on cost, and not on care. We know it is a complex issue. It should never be pushed through by the House under urgency. That is how New Zealand First is viewing this bill. We will oppose this bill. Thank you.

What a pleasure it is as a member of the National Party—a proud member—to stand in support of this New Zealand Public Health and Disability Amendment Bill (No 2) introduced by the very capable Minister of Health, the Hon Tony Ryall. This bill comes to the House after years of prevarication, of blocking, of putting everything it could in the way of it by the Labour Party during its 9 long years in Government. When it had surpluses for Africa and plenty of money, it chose to do nothing about it—years of “obstification”, obstruction, and blocking by the Labour Party. So this is a major breakthrough.

💬 Hon Maurice Williamson: Ha, ha!

Yes, it is one of those Maurice Williamson words. It is one of those Maurice Williamson words on a Friday morning. This is a major breakthrough, and one that society and all of New Zealand, I think, will take pleasure that something is finally being done.

In 2001 Susan Atkinson and others, including Cliff Robinson from my electorate of Coromandel, were part of a group who brought an action into the courts. It has taken years and years to finally put it right. Who was the Minister of Health back then? Well, it was none other than the Minister Annette King from the Labour Party. It was she who blocked and fought. It was she who instructed Ministry of Health officials—instructed the lawyers to block it and fight it. She told the ministry to fight it all the way. That former Labour Party health Minister should hang her head in absolute shame. We do not need her to lecture us, when back in 2005 she expressly opposed the Atkinson action. She expressly opposed it. That member actually instructed the ministry lawyers to block it on every count. She went further—she went further. The Cabinet minute seems to indicate, in fact, that she instructed that there should be no consultation—no consultation. Under her watch, Labour and the health Minister under Labour, when they had taxpayer money that they could have done something about it, did nothing about it.

This is a proud day for the National Party. The Minister Tony Ryall is doing a very good job. He is introducing this legislation not a minute too soon. I support it. I commend it to the House. Thank you.

Well, this is a morning for learning new words from the previous speaker, Scott Simpson. What was it? “Obstification”? “Obstification”, yes. Is there a dictionary in the House? Is there a dictionary in the House? Let us look it up.

💬 Iain Lees-Galloway: He learnt it when he was getting his “edumacation”.

He learnt it when he was getting his “edumaction”, yes—very, very good. Anyway, I am pleased to take a call on this New Zealand Public Health and Disability Amendment Bill (No 2), although I do so with great disappointment. I think it is a very miserly measure that is being rushed through the House this morning. The Government is clearly reluctant to pay. This bill is full of reluctance, full of extinguishments of rights, full of excuses, and full of ifs, buts, and maybes.

The worst thing about it is the fact that it is being rammed through under urgency, when the people who are most affected by this—that is, the disabled people and their families—will have no opportunity for input. They will have no chance to have a say about how this will affect them. They will have no chance to come along to a select committee and tell their stories. What is sad is that there will be no chance for the members of a select committee to gain some understanding of the issues that face disabled people and their families. What is worse is that the Government has ignored offers of cooperation from other parties. We have called on the Government to put aside the court case, which it did eventually. We called on the Government to cooperate with other parties in order to find a solution that the whole Parliament could support. Last year the Government put out a consultation document that I believe was clearly designed to pre-empt any decision making. Although the Government boasts about the fact that it had workshops and things all around the country, it was very clear from the messages that the Minister of Health was giving back then that this was going to be a very, very limited solution and that it would be heavily targeted.

While I have been sitting here I have been thinking about a disabled member of my family. People who have disabled members of their family will understand this. My auntie was severely disabled. My grandmother used to carry her around on her back. She carried her around on her back. She got up in the middle of the night and looked after her. She did not put her in an institution, like so many people did in those days; she looked after her. She taught her to read. She taught her to catch the bus so she could go to town. She taught her to understand money so she could use the little pittance she got. I think that was exceptional in those days, but I know the toll that that took on my grandmother. I know that it contributed to her dying sooner than she should have, because that was years—that was a lifetime—of struggle for her. Even when Peggy, my auntie, went into a residential home, once we stopped putting people in institutions, it was still a burden on my grandmother. There was still that responsibility. So I want to pay a tribute to my grandmother and my auntie and to all of the families who are in this situation of having a much-loved disabled family member whom they do their best to care for, to keep at home, and to remove the responsibility from others, including the State, to care for them, because they love them and want to give them the best possible chance at having a decent life.

One of the things I am concerned about in this bill is the proposal to pay the minimum wage. The proposal is to pay, effectively, half of what private carers are earning, as the Minister has said. As Catherine Delahunty said, this is entrenching a new discrimination, another pay inequality—and we know all about those. I am also very concerned about the responsibility that goes on families. We support individualised funding, but there has to be support put in place for family members who are employed by their disabled adult children, so that they are able to manage the responsibilities of being an employer, which is, essentially, what they will be, or one of the choices that they have. But, as I have said, paying the minimum wage is, I think, unacceptable. I think the families will be very disappointed. I think it shows how this Government values the support and the contribution they make in caring for those very disadvantaged people.

Mind you, it is not surprising, because we had a Budget this week where carers came off worst—actually, third-best; not just second-best but third-best. Rest home money—yes, there is more money for aged care, but there is nothing in the Budget that addresses the low income, the critical pay issues, in aged care. There is something about training but nothing about addressing the fact that most residential aged-care workers are on the minimum wage or just above—nothing about that. The former Equal Employment Opportunities Commissioner Judy McGregor did a very extensive report on the critical issue that is facing us with caring for an ageing population, but there is nothing in this Budget that even recognises that there is a problem.

There is nothing for home-care workers, many of whom actually care for both disabled people and older people. There is nothing for home-care workers, who are now having to go to court as well to claim the minimum wage for the travel they have to carry out between clients. They go to one home, the clock starts ticking, and they get paid the minimum wage for the hour they work. Then the clock goes off again, they get in their car, and off they go to another place, which could be miles and miles away. But they get no recompense for that, except a measly allowance, if they are lucky. They are now going to court to challenge the Government about paying the minimum wage for the period of time that they have to spend on the road in between jobs. And so they should, because so many other people who work in the health care sector or other sectors actually get paid for every hour they work, whether it be going between jobs or not.

There is another group of carers who are currently taking a case to court as well. They are the carer relief workers. They are the carer relief workers who are employed—well, they are not employed but they are funded through the Ministry of Health and district health boards. They are paid $75 for a 24-hour period—

💬 Barbara Stewart: Really?

—for a 24-hour period—$75. They are pursuing a minimum wage case as well. But guess what? The Ministry of Health and the district health boards are arguing that they do not employ them, so they are not responsible for paying the minimum wage. The disabled people they care for, the people whom they provide respite care for, are the employers, according to the Ministry of Health and the district health boards, but they are responsible, it is hands off, not our problem, pass the buck, and put the responsibility on to the disabled people, who are the employers.

That is what worries about me about this bill too. I think we will see more of that buck shifting going on to the people who are most vulnerable and who need as much support as possible, not only in their choice to employ somebody from their family but also to make sure that that support person is paid properly and that their employment relationship is able to be managed. That is a very, very important issue in this bill that I want to see some more discussion on at the Committee stage.

Going back to how I started, can I say that we are disappointed with this bill. We are particularly disappointed that it is going through three stages today, under urgency. I know that it is a step in the right direction, but it is a drop in the bucket. The process is awful, and the information that the Opposition parties have been given about the background to this bill, with the regulatory impact statement like this, is outrageous—it is outrageous. But we are used to that under this Government—we are used to this under this Government. Its process is awful. I think it is disrespectful to the carers, the adult carers of disabled people, and it is disrespectful to New Zealand. Thank you.

Ni hao, Mr Assistant Speaker. Thank you for the opportunity to speak in today’s debate on the New Zealand Public Health and Disability Amendment Bill (No 2). According to this bill, disabled adults aged 18 years and over who are assessed as having high or very high needs, based on a number of criteria, will be able to employ their parent or other family member, except for their spouse or partner, to provide up to 40 hours of support per week. The disabled person will be assessed by a needs assessment and service coordination centre for eligibility. That person, if eligible, can then choose a family carer or a contracted service provider. If they choose a family carer, they will receive funding to pay their family carer an hourly rate as an employee.

The core issue of this matter is to find a balance between the responsibilities of the Government and of families. It has always been challenging to find the balance. It is a challenge not only to the New Zealand Government but also to Governments all over the world. The current National-led Government is now facing up to the challenge, and it is doing extremely well. So I would like to congratulate the Minister of Health, the Hon Tony Ryall, on this achievement. We recognise the important role of families in providing care and support to their disabled family members. It is estimated that the paid family carer policy will cost about $23 million per year. This is a significant investment in family care. It gives disabled people and their families more choice and control in the support they receive. The National-led Government is currently providing much support for disabled people and their family carers. This bill is another step towards providing better services to disabled people. I commend the bill to the House. Thank you.

Here we are on a Friday morning, under urgency, debating the New Zealand Public Health and Disability Amendment Bill (No 2). As members from around the House have canvassed, the issues around this bill are complicated, complex, challenging, and highly emotive. They are issues that ought to be properly considered, there ought to be proper consultation across the parties and with the public, and they ought to go to a select committee. So, for that reason, I predict that there will be a lengthy debate around the issues in this bill at the Committee stage, and I also expect there will be a number of amendments to this bill because, frankly, the Government has not quite got it right.

But here we are under urgency on this challenging issue, and when the public does not get an opportunity to have a say, the members of Parliament who are debating such legislation ought to have all the information available to them. One of the ways in which we get that information is through the regulatory impact statement. I have not seen anything so ludicrous in this House as this regulatory impact statement. For those folks at home, the regulatory impact statement canvasses the issues that the Government has had to consider, and it looks at what the wider impacts of any piece of legislation will be. It is about openness and it is about transparency.

Well, we get a bit of a warning on page 2 of this regulatory impact statement, when we look at the objectives: “Responding to issues arising from court decisions”. It says: “The overall objective is to develop a response to the implication of the Courts’ decisions. These implications arise across a range of family relationships and services where there is a significant risk that discrimination may arise.” That is absolutely correct. “These relationships and services include: parents and other resident family members of disabled adults; other family relationships, particularly spouses and parents of young disabled children; disability support services funded by the Ministry; support services funded by District Health Boards (DHBs)”, and blankety-blank-blank. There is one other, which, for some bizarre reason, the Government does not want us to know about. Well, that is page 2.

We get through pages 3 and 4 OK, where we canvass the different options that the Government may have had. Then we get to the nuts and bolts, the analysis of the options, and what will be the impact of the different options. This is where we in the Opposition actually get to look at all the different possibilities and decide whether we think the Government has got it right. Well, there is an entire column here completely blanked out. Even the title is blanked out, but, from reading it through, I suspect these are the legal implications for the Government: what might be the weaknesses of this bill, and what might be the options for people to challenge the Government over this bill? Is this Government setting up a future Government for legal challenges? Is this Government causing a future Government trouble and possible costs for taxpayers? We do not know, because the Government is not prepared to tell us. Let us go on to the next page: “Analysis of targeting options”. The same column is missing. Again, the Government is withholding information from the Parliament and from the people of New Zealand.

Then we get down to page 12: “Significant legal issues and risks arising from the preferred response”—significant legal issues arising from the course of action the Government has chosen to take.

💬 Hon Annette King: What are they?

I do not have a clue what they are. None of us has a clue what they are, because that is the first paragraph, and that is the rest of it—that is the rest of it. It is completely blanked out. Have you ever seen something so ridiculous? Table 4 says: “Implications of including or excluding family carers of people receiving DHB-funded HCSS”—again, suspiciously, that same column is missing. Is it the legal implications? I think it is.

💬 Darien Fenton: What are they covering up?

What is the Government trying to cover up, indeed? Then we get to paragraph 43: “Spouses of adult disabled people, parents and other resident family members do not have the option of being paid family carers despite having extensive caring responsibilities.” That is what paragraph 43 says. Then we get into what might be the implications of that. Oh, look, once again, it is all blanked out. We do not get to have a look at all of that. Table 5: “Implications of including/excluding spouses”—again, the legal implications are blanked out. Then we get into the preferred policy of not paying family carers to provide any services other than home and community support services. The information is missing again.

How about that for a page out of a regulatory impact statement? Look at that one! That tells us plenty, does it not? Does that not just tell us all about this Government’s commitment to democracy and transparency? What an outrage. “Risks arising from other agencies’ policies”—well, once again we do not know what the risks are arising from other agencies’ policies, because they have all been blanked out too. It just goes on and on and on. At page 22 we have some bits and pieces missing. Then we get to actually a reasonably good section where it is prepared to share, and then we get to the conclusions and recommendations. No. 80 states: “Other options were discounted because implementing them would be too expensive, would not be feasible within the time frame available, or would exclude family carers of disabled people with high needs.” Then it goes into the details about that, and it is all gone. We go on to the next page, implementation—it is all gone as well. And then there is another one of those masterful pieces where the entire page is completely missing.

Well, goodness me! Look at that—that is a mere 28-page regulatory impact statement, and look at how much of it has absolutely disappeared. That is not transparency. That is not democracy. It would be bad enough even if we had the opportunity to go to a select committee for people to have their say, for the families to come and tell us whether or not they think the Government has got it right, whether or not this is the response they were promised, and whether this was the response they were expecting. I just want to check with you, Mr Assistant Speaker. I was expecting this to be a 5-minute split call with the Greens—can I just check that one with you, Mr Assistant Speaker? I want to know whether the families—

The ASSISTANT SPEAKER (H V Ross Robertson): You are absolutely right. The member should sit down.

I will just relax. This New Zealand Public Health and Disability Amendment Bill (No 2) is a slap in the face to some of the hardest-working New Zealanders, and is a demonstration of this Government’s heartless—and I would go so far as to say almost sociopathic—disregard for human suffering and also human endeavour. This bill seeks to reaffirm that people will not generally be paid to provide health services or disability support services to their family members. It confirms that the Crown and district health boards may operate—and always have been authorised to operate—policies in respect of family carers that allow payment in certain limited circumstances, or allow for payment at a lower rate than that for carers who are not family members. It stops claims of unlawful discrimination.

I would like to take this short call today—and I wish I had more time, because there is so much to say, but I guess I will get more chances because we are speeding through—and I would like to speak as the Greens’ women’s spokesperson, to recognise that this bill is a women’s issue. This bill is a feminist issue. I know that the public face of this bill has been a man, and a wonderfully brave man at that. Nothing that I am about to say is to undervalue his work; in fact, the very opposite is true. But about two-thirds of family carers are women. As the website of the Ministry of Business, Innovation and Employment points out, the higher proportion of female carers in all age groups is consistent with lower rates of employment among females, including lower rates of full-time employment. In this country, there is a feminisation of poverty. Women are carrying this economy, and that is made invisible by this Government. This bill is an entrenchment of that inequality.

This bill reinforces what Marilyn Waring described 25 years ago this year as the “counting for nothing” phenomenon. Of course some men are doing this work. Men have now been pulled into this slipstream of women’s inequality and have been caught in that trap, which has been created by this entrenched gender inequality. This has come about from the time when male statisticians and economists drew up the current accounts for nations all around the world. They ignored all work within the home. They made work within the home invisible and pretended that it was non-productive. Despite the fact that it would be really easy to make it productive—because it is actually work that is paid for in other contexts, and all we need to do is use that counting measure in the home—this bill reinforces that inequality and that male patriarchal system that means that women are bearing the brunt of poverty in this country.

History has led us to where we are now. People pretend that we are in an enlightened age of equality and equal opportunity. Well, this bill is another bleak reminder to the women of this country that nothing much has changed. Here, this Government had the opportunity given to it by the courts to recognise discrimination and to improve the situation for women and people with disabilities. And what has it done? It has chosen to change the law to entrench it.

The question is—

💬 Ian McKelvie: Mr Speaker—

The ASSISTANT SPEAKER (H V Ross Robertson): I call the honourable member Ian McKelvie.

I shall be brief, Mr Assistant Speaker, seeing as you did not want me to speak at all. It is great to stand in this House and support a piece of legislation, the New Zealand Public Health and Disability Amendment Bill (No 2), brought to us by Minister Ryall. It is a bill that will make a very real difference to those amazing mothers, or fathers—despite Jan Logie’s assertion—or family members who have worked so hard to make their disabled son, daughter, or family member’s life more bearable.

I have to just counter very briefly a couple of comments made by the Opposition. The Hon Ruth Dyson was misleading the House when she said that current caregivers may well lose current benefits. That is absolutely, patently nonsense. The bill will also be a great relief to many rural family members who are isolated and find it very difficult to get alternative care. I also want to comment very quickly on the somewhat gratuitous comments from the other side of the House that scarcely touched on the issues of the bill at all—in fact, the bill got stuck firmly under Labour’s shadow version of this year’s Budget. It was blanked out—the most part of that blank, of course.

I also want to touch very quickly on the Greens’ comments, because I think they clearly think they have a mortgage on knowledge of this sector of our community, which is far from the truth. And as for Barbara Stewart’s contribution, at least she spoke with compassion, although she ruined that compassion by opposing the disability sector and opposing it receiving a very good start and, I guess, a new start, really, with some contribution to what is a very difficult life for so many people. This initiative will be welcomed by the disability sector and the people who face challenges in life that most of us cannot imagine. I have great pleasure in supporting this bill as it progresses through Parliament. Thank you.