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 third time. I would like to start by thanking the members for their contributions today, even those who sought to rewrite history and demonstrated former ministerial amnesia. They all made a contribution. They are all people who I think genuinely want to do something to help those with very high and high needs. I think they may have, though, struggled during the best of times to give the priority to this issue that they now want to demonstrate they do have.

This bill is the Government’s solution to the Atkinson case. It does shift the boundary between family and taxpayer responsibility, but it has landed in a fair and reasonable place. Today New Zealand becomes only the third country in the world that will pay a wage to some family members for caring for other family members. Only Sweden and the Netherlands have done so before today. This bill makes it clear that it is the policy of this Government, as it was of the former Government, that families have primary responsibility for the well-being of each member within their families, and the Government should not interfere in that responsibility. The role of the Government is to support family members in their care and support role, assisting where families are not able to meet the needs of their loved ones.

Society expects that we care for and support our family members, society expects parents to support their non-adult children, and society expects spouses to care for and support each other. That is because of love, affection, and responsibility. However, the courts in Atkinson have found that it is beyond society’s usual expectations for family members to care for adult family members who are living with lifelong disabilities. So change is needed.

This bill allows the Ministry of Health and the district health boards to establish family care policies that allow them to choose on a number of bases how those supports will be provided, to adopt policies, and to make payments to specified family members. As I have said in this debate, it is not the intention of this bill to extend the Government’s responsibilities to support all family members in their caring roles. People will not generally be paid to provide health and disability services to family members. This is particularly so for parents who care for non-adult children and spouses who care for each other. Targeting for those most in need is the fairest approach.

In today’s Budget we announced $92 million over 4 years to implement the family carer policy. The ministry will allocate funding to disabled people in high and very high needs situations as assessed. Within the principles articulated here there will be some flexibility within the policy to consider in particular circumstances disabled people who do not meet the eligibility criteria but where payment is clearly desirable. The case that I gave during the first reading was of those who live in very remote rural areas where they are unable to get support.

This has been a very complex issue. Ministers have taken considerable legal advice. It is this legally privileged advice that caused so much of the debate and discussion in the House about the regulatory impact statement. In coming to this policy decision the Government has undertaken a very robust consultation process, which I outlined in the Committee stage. The Government has also considered very, very deliberately a whole range of matters that should have been taken into account when making this decision.

We know that other Governments have also considered these matters and chose not to change policy. That is a decision that they will have to defend to New Zealanders. It is also a decision that they will have to defend that they oppose the progress in this bill, because this does make New Zealand only the third country in the world to provide for paying for some family members to have a wage to care for others. This does not happen in Australia. This does not happen in Britain. This does not happen in Canada. It does happen in Sweden and in the Netherlands. New Zealand today will become the third country in the world to adopt that position.

I think all members of this House do feel and admire the huge contribution that family carers provide throughout our country. They have a huge responsibility, and so many of them undertake that responsibility quietly and are accepting of that and willing. Where those families cannot provide that support or need additional support, our welfare State provides that support. Not only may the adult disabled child be receiving income support but also the parents receive additional support in terms of home support workers, providing support to not only the disabled person but also the parents themselves. The Government does fund carer support and it does fund respite support for those carers. So supports are there.

The Government accepts its responsibility. Today we move that balance slightly in accepting that we will pay a wage to those family members assessed as being able to get that in the way that they support their disabled family member in the circumstances outlined in the family carer policies that the ministry and the district health boards will adopt.

Can I thank the members of the technical advisory group and the many hundreds of people who made submissions. Can I also thank the many officials who have worked so hard in the development of this policy. I want to thank my ministerial colleagues, particularly the Associate Ministers of Health, and Mrs Turia in particular, for the many hours of work that we have undertaken as we have sought to find a fair and reasonable balance, to make sure that we have protected the interests of the person who is being cared for, of the families who are doing the caring, and of the taxpayers.

I think today that this solution lands in a reasonable place, a fair place. It certainly is progress. The Government accepts the indications given by the courts about the need to change policy, and this bill is about that. I certainly commend this bill to the House. I hope that the many people who will benefit from this will recognise that the Government, and indeed the Parliament, is acting with the best intentions to balance the interests of so many involved in this matter.

It is with considerable disappointment that I rise to continue to oppose this legislation, the New Zealand Public Health and Disability Amendment Bill (No 2). As the Minister of Health quite rightly said, parts of this legislation progress an issue that has been around for two decades. I want to put on record again the offer that Labour made some time ago to the Hon Tony Ryall, and that was to have an approach that ensured that this policy was sustainable—a policy that all parties signed up to, that we could get agreement on, and that we could have a lot of input into. Instead, the Minister, in an arrogant way and in a detached way, has ridden roughshod not only over the family members and people who wanted to have an input into the detail of the policy but also over all other political parties in this House and, indeed, proper process.

We have seen a process that is totally unacceptable as part of a Budget process. This is not a Budget confidence and supply move that required urgency. It did not require the urgent attention of the House. It did not need to be rammed through all stages under urgency. In my view the only reason that that was done was in order to secure the votes of the Māori Party. It has been covered up as a confidence and supply measure. It has been put through under urgency to avoid public scrutiny rather than to progress the substantive part of the legislation. I think that is something that the Hon Tony Ryall should be embarrassed about, as should the members of his party.

In terms of the substance of the bill, we have had a pretty abbreviated debate on it, frankly. It is very disappointing, for example, that I was not able to get a call on any one of my 10 typescript amendments to clause 4 because the Chairman of the Committee accepted a closure motion. That is very disappointing, given that they were quite substantial amendments, and it really reinforced the concerns that Labour had about this legislation.

My amendments talked about, for example, the need for district health boards or the Ministry of Health itself to always consult with affected parties in the future if there was going to be any change to agreed family care policy. We talked about the rates that family caregivers would be paid, and proposed that family caregivers be paid at the same rate as most other home support workers are paid. They are doing the same job and they should be paid at the same rate, rather than the minimum wage.

We talked about removing the extinguishing of rights that the Minister of Health has in the legislation so that the family members who are not covered by this legislation—the family members who care for disabled members of their own family who are not going to be paid—will now not be able to take a legal challenge to that continued discrimination. Labour wanted to have that extinguishing of rights removed from the legislation. There is no need for it.

We wanted to make sure that people were still able to take a personal grievance case under the employment relations legislation. That amendment was thrown out as well. In fact, I watched Tim Macindoe—I think he is the junior whip; one of the junior whips—rally his numbers to vote in opposition to my amendments, and it was clear that he had not read one of them. It was clear that he voted on behalf of the entire National Government without a blind clue as to what he was voting on. I think that should be an embarrassment to the current member of Parliament. He may always do it, but he should give his colleagues the credit of his position and read the matter on which he has been given the responsibility to vote. He is short-changing the position of junior whip.

Also, the Minister of Health refused to answer the many questions that we raised with him in the Committee stage of the bill. When we leave this place tomorrow night when we have finished urgency, we will go back to our home centres—

💬 David Bennett: We’ll be here on Sunday.

On Sunday? The House does not sit on a Sunday, Mr Bennett. On Monday, I am sure, we will have approaches from families saying: “We heard that Parliament passed the family caregivers legislation. We want to know when we will be getting paid.” We will not be able to tell them not only when but whether, because we have no idea from this legislation whom this is going to apply to. All we have got is a random number and then information in the advice that was given in the regulatory impact statement and the options given to the Minister, which makes it clear that the Ministry of Health does not have a clue about the figures. They are a best guess. I am sure that the officials tried really hard, but there is no way that we could rely on their figures.

They are a darned sight better than what we got in the regulatory impact statement, though. In my few years in Parliament I have never seen a regulatory impact statement of this quality. Look at this, Mr Speaker. You missed some of the debate but, just in case you would like to see it, there are big areas blacked out. But wait, there is more. Look at this page. Fantastic! The whole page of the regulatory impact statement is blacked out. And here is another one—an entire column blacked out. Go over the page, and the entire section that would give this Parliament the information it needs is blacked out. On the next page the whole column is blacked out. On the next page the whole column is blacked out.

💬 Ian McKelvie: No!

Page after page after page. The member of Parliament for Rangitīkei thinks it is funny. Well, I want to see that member front up to the families of disabled people in his electorate on Monday morning and say that this is good information—that this is good information. It is blacked out, the very information that members of Parliament need to determine whether or not this is a robust decision.

Dr Paul Hutchison—I have always thought more highly of that member, excepting this. That high expectation has now been shattered. National Party members one after the other after the other, like sheep going to the slaughter, are voting for legislation, refusing to look at amendments, and leaving family members who have been waiting for this decision, waiting for this legislation, in limbo yet again, because not one member of this House, including the Minister, will be able to tell anyone next week or the week after or the week after or the week after who will be getting the payment.

We know, from information from the Minister—the only bit of information that he has shared, and not directly to the House; we got it indirectly—that the operational decisions about who is going to get this money will not be made until September. Regardless of the fact that we have got the wrong day on the wall—because Parliament does that under urgency—I know it is May and I know there is a big space between May and September. That is another confirmation point that there is no justification for this legislation going through the House under urgency, let alone going through all stages under urgency and not being referred to a select committee at all.

So we have had a shonky process, a process that has completely ignored all the parties who deserve respect and who deserve to have a say in this legislation. They have been cut out. We have had National members who are so keen on getting out of this building that not one of them even bothered to read any of my 12 amendments—not one of them. I could have put anything in those amendments and National would have voted against it. I could have had an amendment proposing to double the salary of National members and they are so stupid and so lazy they still would have voted against it.

It is demeaning of the parliamentary process to have that sort of disregard, lack of integrity, and complete lack of respect for the families of disabled people. They are whom we are talking about. This is not a technical bill that fiddles around with some machinery; this is a bill that has a huge impact on New Zealand families who have disabled members, who went to the huge personal effort of taking their claim of discrimination through the Human Rights Review Tribunal, to the High Court—

💬 Scott Simpson: Blocked at every step by Labour.

—and to the Court of Appeal, and won. That member should close his mouth, breathe through his nose, and wait till he gets a little more information about the truth, instead of repeating the spin. Spin does you no good. You can have a robust debate only if you bother to find out the facts yourself—

💬 Scott Simpson: We don’t need that member pushing—

And it is quite clear that that member, who is another one who is going to be going to his home electorate, Coromandel, should be hiding his head in shame—should be hanging his head in embarrassment—because he knows zilch. He knows nothing about what has gone on in this process and has no ability to front up to families in his electorate and tell them the truth, because we had no truth from the Minister. We know that no determinations will be made—

Order! The member’s time has expired.

Thank you for giving me the opportunity and privilege to speak on this New Zealand Public Health and Disability Amendment Bill (No 2). I too want to acknowledge all those family carers around New Zealand who for years have given themselves so selflessly for others.

Despite Opposition members saying that they did not want to talk politics, they have done directly the opposite over the last few hours, and I think that is a great shame. Fairly and squarely, the Human Rights Commission made its ruling back in 2001, and, in times of plenty, the Labour-Greens coalition had plenty of time, if those members had wanted to, if they had really wanted to—even though there was a court process going on—to come to an earlier solution. But they explicitly failed to in 2005, and they explicitly failed to in 2008.

Targeting high and very high needs people was supported by 68 percent of all submitters and 71 percent of family carers. This was a thorough consultation process. Changing the policy to pay all groups of family carers, rather than carers of high and very high needs people, would result in unmanageable spiralling costs, and I believe that the thoughtful contribution from the Attorney-General indeed explained that and explained that the courts often do not take into account the fiscal constraints of the time, which is absolutely what Labour and the Greens so flagrantly forget about.

This policy adds an extra $94 million over 4 years on top of the $100 million extra the Government is spending on disability support. This is a fair solution to a challenging and complex issue, and it makes New Zealand the third country in the world—no other countries have done this before—to achieve payments in such a way.

We commenced debate on the New Zealand Public Health and Disability Amendment Bill (No 2) at around 9.20 or 9.30 this morning. We have gone from an introduction of a bill right through to a third reading in 1 day. It has been a truncated debate by the Minister of Health. It has been truncated by the National Government, which voted for closure along the way, and truncated by the Chair, who took a closure motion on the most significant part of the bill, when there were a large number of amendments put forward by the Labour Party in the short time frame in which we had to examine this bill.

We have had little or no debate from the Government at all. There was a contribution from the Minister of Health on the first reading and the second reading and the third reading, and there was one contribution from him when he was in the chair. We had no contributions at all, to speak of, from the cannon fodder, muzzled backbenchers, who have sat there, sitting in their seats and keeping them warm for the day. They had read neither the regulatory impact statement nor the statement from the Attorney-General on this bill. They read none of the amendments. They just went along with whatever they were told, and voted when they were told to. What a mockery this has made of Parliament today. This is one of the worst processes on a bill, which has been 20 years in the making, as the Minister said. This is an incredibly complex issue, where it is hard to find the balance. It is an area where we ought to have taken the time to work across Parliament and have taken up the offers that were made by the parties in the Opposition to work together to get an enduring solution to this longstanding problem. That was ignored, and we had the bill introduced under urgency and debated and passed in 1 day.

The public of New Zealand who may have followed this debate today will have no say. They will not have any input at all. We were told that we should accept that there was a technical working group that looked at this bill, and that it came up with the ideas. Well, when we heard about the technical advisory group, we found that those who are the carers had very little input at all. Would you not have thought that you would involve in a very proactive way the very people who care for disabled adults in New Zealand? Would they not have had a lot of information? Would they not have had real, meaningful experience about what it means to care for a family member, 24 hours a day, 7 days a week, with brief periods of respite? What we found out was that the technical advisory group had one member from Carers New Zealand, but she did not get any say on the policy that was developed. The only input she had was when the Ministry of Health called her and asked her to answer some questions. That, to me, is not a technical advisory group—well, maybe it is technical, but it certainly is not advisory. So the input into making this policy was almost devoid of those whom it affected the most.

What I found interesting in the Minister’s third reading speech was what his expectations of New Zealanders are. That was very, very enlightening for me, and puts into perspective where the National Party comes from. His expectation, he said, is for New Zealanders to look after their own children, and that they should be expected to look after their own family. Well, in the main, New Zealanders do, but we have always been a society that has said that the most vulnerable, those who are at the most risk, those who need support in the society we have, would be picked up and looked after. That has been a fundamental principle of New Zealand for my lifetime, and well before my lifetime. But what we heard from the Minister today is that it is dog-eat-dog—you look after your own, and when we have to do something about it, and we are forced to, we will make a few concessions. That is not the New Zealand that I want to live in. That is not the New Zealand that most people expect. They expect us to look after the most vulnerable in our society, and the most vulnerable we could have at this stage are those who are so handicapped that they cannot look after themselves.

We closed the institutions around New Zealand, and it was a darned good thing we did, too. We closed them because we knew we could look after them better in the community. The closing of institutions was sold to the people of New Zealand that people would live better lives in the community and that they would be supported. Those were the principles that underpinned the closing of the large institutions in this country. But that is not what we heard from the Minister. Perhaps he does not know that actually we do pay grandparents to raise grandchildren now. But he said that we should not pay and help people look after other people’s children or their own children. ACC pays for carers to look after people, but we cannot pay these people who have not had an accident but who by some fate have ended up being disabled. I believe that we have finally seen the face of the National Party and the underpinning philosophy of the National Party, and it is not a pretty one at all.

There was insufficient time for consultation, and we have had to rely very heavily on the regulatory impact statement. It was not available until this morning, when we started this debate, and, as has already been said throughout the day, we were shocked at what we received. The regulatory impact statement—maybe this is an issue that you, Mr Speaker, might like to take up—is there to provide information to this House for us to be able to debate a bill with some knowledge and confidence that we know what we are talking about. It is a regulatory impact statement that the public can read. They can look online to see what the bill is about. Firstly, the regulatory impact statement was not online, and, secondly, it was so redacted that you could not read it. I called it the “blankety-blank-blank-blank-blank regulatory impact statement”—page after page after page of blacked-out information that may have helped this House. That was not good enough. I have not seen that before. I have never seen a regulatory impact statement of that order in my time in Parliament.

I often criticise the Hon Dr Nick Smith, but I will give him credit for this: when the regulatory impact statement came out on Better Local Government, he did not go through it and do this to it. He did not go through and cross out all the things he did not like. We at least had the information to be able to debate it.

We have heard today of the many people who care for families, and we know from the feedback that has been coming in to us as we debate it that there are many people who are disappointed. In fact, Mr Cliff Robinson, a 76-year-old man—

💬 Ian McKelvie: This is the fourth time you’ve used the same man.

—is caring for two children—and I will say it again for the member for Manawatū. Mr Robinson is caring for two disabled children, a 43-year-old and a 40-year-old. A 76-year-old is looking after them. What did he say? He has waited for a half-decent scheme. What did he get today? A half-baked one. The feedback we have got has been disappointment. The feedback has been that they cannot believe, having made a decision, that the Government would pay only the minimum wage for these families who will be looking after disabled family members. The question we have asked all day is why. Why would we pay these people less money than we would pay other carers? The Ministry of Health recommended $16 an hour, and they are to be paid $13.75. They are not working a 40-hour week; they are working 24 hours a day, 7 days a week, and they are told by this Government that they are not worth the same as what other carers are paid. We cannot understand that.

We moved an amendment, and I put it to the members opposite to vote against it, and they did—and they did. Every one of them is culpable because they have said that those carers out there looking after family, with highly disabled family members, are not worth being paid the same as other carers in our society. This bill is a disgrace. The process is a disgrace. We could have done so much better but for the arrogance of this National Government.

Tēnā koe, Mr Speaker. It has certainly been a long day, but it is nothing like as hard as it is to take care of a family member with complete absence of mobility, and nothing like as hard as it is to be that person trying to live a good, independent, and self-determining life without money coming into your family that actually reflects what you are needing. That is much, much harder than listening to this debate.

I just want to comment briefly on the Minister of Health’s speech, because it was very interesting, and one of his core points was that the State or the Government should not interfere in family life, and it was a definition of neglect. I would not call it benign neglect; I would call it discriminatory neglect, and, unfortunately, this bill, the New Zealand Public Health and Disability Amendment Bill (No 2), under the guise of improving things—because of the caps that it has set and because of its refusal to allow people to complain to the Human Rights Review Tribunal—is actually perpetuating a form of benign neglect. I hope that the families who are able to get that $14,000—the 1,600 families—will benefit from that $14,000 a year.

It certainly is not a living wage, but at least they might get some money. It is certainly not going to meet their needs, though, and it will be worrying if they then lose some other forms of support because they have been given this money. That is why this is a crazy mosaic. If you are involved with trying to patch together the funding to support a family who has disabled members, sometimes more than one—in the Robinson family there are two, and I know other families where there are at least two family members, because some of the disabilities come from inherited genetic conditions—the financial burden is phenomenal.

There is a research document by Auckland University that talks about the cost that family members with disabilities actually pay. It talks also about the contribution that, if supported, they actually make to our economy. But with what the costs are, they pay so much more for everything, and I think the rest of us are immune to that. We are immune in our privilege of being able to walk, talk, and access resources without the discrimination that we are currently actually increasing.

Let us go back to those people, because for me it is not about which party did what. Nobody did anything good enough—none of us. I do not think there is any point in pretending. I do think it is the responsibility of Parliament to take on complex issues. I do not think it should have taken us all these years. Whenever I talk to people like Cliff, what I hear in their voices is the bewilderment of being ignored. They want to know why we took so long, and I cannot answer that question. They do not understand why there have been so many barriers put in their way and why they had to go to court, and why they had to go to another court and another court because the Government kept appealing the decisions—that was clearly discriminatory.

They are bewildered that the package is so messy and unfinished and that we still cannot answer the question about who is going to get what, and yet time after time after time it was obvious that the Ministry of Health was going to lose in court. It was blatantly obvious. There were no arguments. If you read the judgments, you see that the judges in the High Court and the Court of Appeal said that the Government was not putting up arguments; it was reinforcing discrimination.

So it is not like there has been no time to prepare a package and no time to work through this issue with the sector; there just has not been the courage and political will. We will not pay the price, but the people out there who will not be part of the 1,600—it could have been 5,000—will pay the price. It is for them that I am standing here saying that we could have done better in the past and we should be doing better now.

Let us have another look at some of the aspects of the process and the bill. The Government is not doing this as an attempt to enter into international leadership on disability rights and carers’ rights issues. That is disingenuous in the extreme. The Government is doing this because it ran out of time and because the court ruled that it had to do something. If you look at the very first page of the bill—the explanatory note—it says very clearly that the Government had to do something. It says: “In the absence of legislation, the Government’s policy would be unlawful and the Government could face a very large number of claims. The only feasible way of managing these risks is through legislation.”

I am not sure that that is a heroic stance for human rights that will be regarded by the international community as a recognition of the United Nations Convention on the Rights of Persons with Disabilities. I am not sure that we are going to be heralded as a country where the rights of people with disabilities and their nominated carers are being upheld in a magnificent way, in a way that we can be proud to show the world. Kicking and screaming, the Governments of the day have fought this issue until there were no more places to go. In order to shut down debate, the Government has capped it, and it has put the bill in Budget legislation to get it through the House under urgency, without a select committee process, so it did not have to hear unpalatable truths, and then it will become impossible—impossible—to complain.

I am not sure that that looks like a great international success in terms of human rights. The international community on disability rights, which is a strong community, is not really naive enough to imagine that allowing carers to be paid—some of them, but there is a definition in this law that they can be paid less than other people who are not family members—looks like human rights. I am not sure that looks like human rights, and I am not sure that those people who fought so very, very hard for disability rights to be centre stage in this nation are clapping for us tonight. In fact, I know they are not.

So let us have a look at the process that resulted in this bill. The technical advisory group was a very short-term group, and it was actually quite a limited number of people who were involved and most of them were from the Ministry of Health. I wrote to Mr Ryall in June 2012 and asked him to consider with urgency the need for genuine experts in that group who understood the family care issues, and to have a creative and innovative approach to developing a fair framework for payment. I asked him to appoint a representative of the Human Rights Commission, because it has demonstrated a strong understanding of the rights issues. I also asked him to offer a place to families who had been through this process, because I was trying to applaud him for recognising that “Nothing about us without us.” is the disability catchcry. So people with disabilities and their families should have been at the table.

I said to the Minister that there are vested interests who want to determine the policy framework, and that the voices of the disabled and the carer parents must be here if practical solutions are to be negotiated. It would not be useful if the panel was dominated by Ministry of Health officials, given their failure to find creative and cost-effective solutions that did not discriminate against families. The answer I got was four lines: “Thank you for your letter. Members of the claimant group are not on the group because they are still involved in a legal process which involves a remedy hearing. The remedy hearing will deal with the claimants’ issues.” That was 3 July 2012. The remedy hearing is yet to take place. So not only are the narrow issues in terms of one set of families not yet addressed, and they were not allowed to be part of the solution, but, in fact, everybody else is equally confused about where they are at as well.

I just want to step back and acknowledge a particular group, the organisations known as the disabled people’s organisations, the truly “Nothing about us without us.” people. They came to see me and talked about some of the complexities. Some of them were very concerned and very genuine about the power of people to choose who their carer was. I think that they had very good points to make. I said to them: “Rather than stopping this through the legal system, let’s have forums and debates where we, the disabled people, and their carers actually debate this issue and create a framework with the political parties.”

So if you are talking about solutions, what the Green Party wanted to see, and what we still want to see, is a cross-party approach to this. Having a war about who did nothing is not attractive to the people of New Zealand. They do not care that we have not done anything properly on this issue. What they care about is what we are doing now, and what they want us to do is to work constructively together to find a solution that is not just determined by the cheapest possible solution. “By all means,” the disabled persons organisations and carers groups have told me, “have some restrictions.” We need to negotiate fair restrictions, but you cannot do that in isolation in a dark room, and you cannot do it in a regulatory impact statement that is actually risible. It is completely risible. An example of a risible regulatory impact statement is what we saw today, and that is not what the people expected of us, nor what they wanted.

So there were solutions; there still are. We need to negotiate and set agreed boundaries, but like any issue of discrimination, negotiations should be with the most affected. Those are the people who know best what their needs are. So, unfortunately, justice delayed remains justice denied. I really do believe that the shocking discrimination in this bill is not just the cap on the money and the refusal to pay the minimum wage. The real disgrace is the attack on people’s right to complain.

Why do we have a Human Rights Commission if its status is going to be undermined in this way? It stood there, alongside the families, at every step of the way. That was its job. Its job is to be there when people are marginalised systematically and cannot get any form of help. It is no good being romantic about what the health system delivers and how contract caring works, because it does not. What we need to do is to give them justice, and now justice has been denied. I really believe that Parliament has failed these people and could do much better. Kia ora to the families. Kia kaha.

It is a pleasure to rise in support of the third reading of the New Zealand Public Health and Disability Amendment Bill (No 2). The bill is in the name of the Hon Tony Ryall, and I commend him for his efforts in bringing it to the House as part of Budget 2013. The bill, of course, responds to the Court of Appeal’s decision in Atkinson, a case that was initially started in 2001 in the Human Rights Commission. That is where it had its genesis, and it was fought at every step of the way by the then Labour Government and its health Ministers.

Minister Ryall said in his third reading speech that we have landed in a reasonable place, a fair place, with this legislation, and on that I wholeheartedly agree with him. I said in my first reading speech on this bill that it was a proud day for the National Party and a proud day for the National Government. Well, actually, it is a proud day for New Zealand and all New Zealanders, because we are only the third country in the world to provide legislation of this sort, and as a National member in this Government, it makes me proud to be part of it.

So congratulations to Bill English and Tony Ryall, who have brought this measure in under the tight fiscal conditions that we are facing in the country. We have got the balance about right. I commend this bill to the House. Thank you.

I rise on behalf of New Zealand First to oppose the third reading of this bill, the New Zealand Public Health and Disability Amendment Bill (No 2). It is with great disappointment that we do so. We had thought that there were some reasonable parts in this bill when we first saw it, but on closer inspection we found that there were not.

This bill in itself is a total contradiction. On the surface it looks good, but it is not even nearly right. It is not near enough; it is so far out that it is absolutely terrible. I feel very sorry for all of those people who had such high hopes. We all know that near enough is not good enough, and this bill shows that totally. New Zealand First has always said that we recognise the right of every New Zealander to equality of opportunity. We know that in many cases the real handicap to full participation in society for people with disabilities is not the disability itself but environmental barriers, ill-informed attitudes, and inadequate support services, and this bill smacks of all of the above.

The legislation is a lost opportunity. The fairness in this legislation is an illusion. It is a little bit like smoke and mirrors. Caring is a very important issue in the disability sector, and we were looking forward to seeing this issue finally settled. It has been around on the agenda for many, many years, and we wanted a fair solution. We think it is a sad day for families providing care for their loved ones. It is disrespectful to the carers and to our disabled community. I know of families who were initially quite excited when they heard about this bill, but it severely limits the rates that carers can be paid for the very important job they do. What they have ended up with, as the Dominion Post has said, is a “half-baked” scheme, with a start date in October, and there is nothing really specific to work out what families are going to get. The opportunity was there to do more, but, actually, nothing has been done, and now nothing can be done.

The bottom line is that the Government has not got this legislation right, and I think that was shown by the number of amendments that the Hon Ruth Dyson actually placed on the Table. Unfortunately, the Hon Ruth Dyson did not get the opportunity to even discuss those amendments, which is something that usually happens in this House. The fact that the regulatory impact statement had so many pages that were blanked or, in this case, blacked out is not the regular practice of this House, and definitely does not reassure anyone—especially not the Opposition—that what we are looking at is all of the facts on this particular issue. I know that the Government members themselves, if the same situation was presented to them when they were on this side of the House, would have screamed loud and long. This is not the usual practice we have to bring legislation into the House. It is just amazing to us on this side of the House that the regulatory impact statement was tabled only this morning, and basically it has been of little use to anyone—anyone at all.

The second issue that is very perturbing about this particular piece of legislation is that the democratic process has been totally ignored. The process for this legislation needed to be fair and just. The bill needed to go through all of the stages and have public input, and have consumer input as well—something that has not been done. We in New Zealand First would have liked to see the Parliament—all of the Parliament—support this particular bill.

Disability is an issue that we all feel very strongly about, and we want the best for carers and for their family members. It is a very complex issue, and the bill did not deserve to be pushed through this House under urgency. The bill needed to go to a select committee. The Health Committee is a good committee for a bill like this to go to, so that people who are affected by the bill could have actually had some input. We would have liked to hear from family carers. We would have liked to hear from people who are directly affected by this bill. We know that family carers play a very important role in caring for their disabled family members. The focus should have been on ensuring that the outcome was positive for carers and for their loved ones. The high threshold that is required for this payment is not really fair in this case.

The third big negative is that carers will be paid less than the minimum wage, when one works it out, which is totally unfair. We would always stand up for people who are paid less than the minimum wage. Spouses and their partners are excluded, which presents challenges. We know that people get very protective about the people whom they look after, and they do not like others to look after them. Those aspects of life that we all hold precious, such as privacy, do need to be respected. Will $14,365 per carer really meet their needs in today’s day and age? I do not really think so.

The measures that are actually proposed by this bill are totally inadequate. They are not enough. Carers are hard-working. They are compassionate people working in a very demanding role. Quite often—very often, in fact—they get no thanks for the roles that they are carrying out. It is not an easy role, to be a carer. You have to provide a great service 24/7. The carers actually give up every aspect of their lives. I know of one couple who have got a 24-year-old disabled daughter. The father works from home, has not got a job out in the community, and to survive the mother goes out at night and works during the night hours. It is not easy.

Then we read in the general policy statement that in amending the New Zealand Public Health and Disability Act 2000 the bill allows the Government to “reduce the on-going litigation risks, while allowing the Government to implement policies of paying family carers …” where it wishes to do so—where it wishes to do so. I think that is a real cheek, a real hit in the face for those families who are working so hard and doing such a great job for their disabled family members.

New Zealand First cannot support this bill. We would have liked to, but we feel that disabled people and their families have been really short-changed in this instance.

I want to emphasise that the National-led Government has been working extremely hard to provide better services to disabled people. The Ministry of Health spends over $1 billion a year on a wide range of disability support services. What is more, support and payments from a number of other agencies are available to disabled people. Thanks to our most capable Minister of Health, the Hon Tony Ryall, New Zealand is leading the world in looking after disabled people. Not only that but also we are leading the developed world in developing our economy. Only by developing our economy will we have more funding for public health and disability services. This New Zealand Public Health and Disability Amendment Bill (No 2) will provide better services to disabled people and help develop our economy. I commend the bill to the House.

Can I start my final contribution on this New Zealand Public Health and Disability Amendment Bill (No 2) by acknowledging the families and the people with disabilities who have been fighting for so many years to get some progress in this area. I want to acknowledge those who will be better off—slightly—as a result of this legislation, and I want to acknowledge those who will be left out by this legislation. It will be a particularly sad day for them, because the Government gave them hope that finally the solution was going to be found, and then it pulled that hope away by bringing this bill to the House. Some people have called it half-baked. I think it does not even make it to being a third baked, actually. It is a very, very poor solution. It is not even a solution to the need to support families who are looking after people with disabilities, who make that commitment 24/7, 365 days a year for year after year after year. It is a commitment that those of us who do not experience that cannot possibly imagine. We cannot possibly fathom what it takes to look after with that degree of care someone with that level of need, and everything that goes with it.

The other aspect of this bill has been the astonishing way in which the Government has been prepared to trample on democracy and human rights. This regulatory impact statement is starting to become quite famous, actually. I think it is more famous than the bill.

💬 Catherine Delahunty: The risible RIS.

The risible RIS, as Catherine Delahunty said. There is a song related to The Wizard of Oz in there somewhere, which might be worked on later tonight. But this really is an astonishing display of how poorly this Government considers the need for openness, transparency, and democracy. The regulatory impact statement is supposed to be the advice that we MPs can receive—impartial advice so that we actually know what the bill is about. We can take that advice to the select committee, and submitters can have a look and they can come and tell us what they think about it. Well, of course, there has been no select committee process. That actually makes this document even more important, in the absence of a select committee process.

Members of Parliament need even more information than what we would ordinarily get, because we do not get the opportunity to hear from the people whom the bill will actually affect to hear what the impact will be on them. And this is what we get. This is what we get from this arrogant, arrogant Government, which thinks it knows best and that it has the right to trample on democracy and on people’s rights. It is bad enough that we have pages blanked out like this in the regulatory impact statement, but what is even worse is that the bit that is blanked out the most is the section titled “Risks arising from other agencies’ policies” about risks associated with enacting this legislation.

Surely members of Parliament, the only people in New Zealand who get an opportunity to vote yay or nay on a bill, should have a full understanding of what the risks associated with that legislation are, Mr Macindoe. Surely we, at least, should get a full understanding of what the risks are, but we do not even get that. That is just the approach that this Government takes. Who cares about democracy, as long as the Government can get the politics right and convince people that it has done the job and actually settled this issue.

The second bit, of course, is the human rights factor. What this bill does is it says that people can no longer take their concerns to the Human Rights Commission. They could up until yesterday, but from today onwards, no, it cannot be done. So people no longer have the right to actually refer cases to the Human Rights Commission to ensure that there is no continuing discrimination. But, of course, what we know is that this bill actually establishes a new discrimination by saying to people that if you were lucky enough—if you were smart enough, quick enough—to get a complaint in before 16 May, you are OK; after 16 May, that right has been taken away from you. I think these are aspects of the fact that it is not being extended to all the families and that there is some arbitrary measure of what “high need” actually is, and that has not been fully explained in this bill. That will be something that the Minister of Health, I suppose, will calculate at some point in time, and it will be calculated based on cost, not on need. The fact that these rights to refer to the Human Rights Commission have been taken away from people, and the fact that carers will be paid less for looking after a family member than they would if they were looking after someone who is not a family member, are more discriminations that are built into this legislation. It just makes it all the more disappointing.

It would be one thing if people’s immediate reaction to this bill was that it was a bad thing, that it was introducing something that was anathema to the Opposition, that it was something that people had not been seeking, but it is even worse that it purports to be a solution to a problem that has been around for 20 years and that it was introduced as something that should be hailed in the disability sector and that the families should be really pleased to see. We know that simply is not the case. The little bit of response that we have been able to have—because we have not had the select committee process, the only opportunity that people impacted by this bill have had to respond has been to email and call MPs through the day. The response we have had has been exactly that, that initially they thought this looked quite good, but then, as the hours went by, it just looked worse and worse and worse, as people started to grasp what the bill was actually about. I think that is sad and an absolute travesty, because people expected more. The worst bit about it is just how little—

Order! The House is suspended for the dinner break. I will resume the Chair at 7 p.m.

Sitting suspended from 6 p.m. to 7 p.m.

💬 IAIN LEES-GALLOWAY: Let me just begin the final snippet of my contribution on the bill by saying to all those members opposite who have spent the day saying what a wonderful deal this is for the families of people with disabilities that I can highly recommend the item on 3 News this evening, where I think you will get the facts about how the families actually feel about this. I am afraid that for the Government it is all bad news, because, as we predicted, the families have seen right through the politics, they have seen right through the spin, and they are not happy with you, Mr Ryall.

I just want to finish up by saying that this is a really, really unfortunate day for those families. They have been waiting for so long for this to happen. They have been waiting for so long for justice. They have been waiting for so long for the Government to respond to the court case that occurred last year and to come up with a full solution. What the Government has actually done is thrown them a few crumbs and then blocked anybody—any of those families—from trying to pursue this any further in the future. It really is an insult to those families who have worked so hard. I just feel sorry for them. I want to say to them that we in the Labour Party thought that the Government had done the right thing. We heard, as everybody else had, that the Government was prepared to act and it was going to pass legislation. But just as everybody else has done today, as the day has gone on and we have looked at this closer and closer, we have realised that what has actually occurred today is a travesty. It is anti-democratic, it tramples on human rights, and it has taken away the opportunity for those families to actually pursue this issue further. It is a very, very sad day, and Tony Ryall should hang his head in shame.

It is a shame the member Iain Lees-Galloway did not watch One News. It gives me great pleasure to speak for—[Interruption] Yes, that is quite understandable. It gives me great pleasure to speak on the third reading of the New Zealand Public Health and Disability Amendment Bill (No 2). I hope everyone listened to Minister Ryall’s speech at the commencement of the third reading. It covered the intent of this bill perfectly.

I have listened with sadness to the criticism of this bill and the attack on the motives of the Government, and I can hold my head high knowing that this will make a difference, and that this groundbreaking bill will lead eventually to a new environment for disabled people and their loyal, caring families. Those who live with and who work with and for the disabled know that this is progress. I look forward to this bill becoming law shortly.

I rise to make a final contribution on the New Zealand Public Health and Disability Amendment Bill (No 2). This bill is a response to the Court of Appeal decision on Ministry of Health v Atkinson, which was essentially about family carers of disabled adults. I think something that we probably would agree across the House is that caring is a critical issue in our country, and that increasing numbers of us are caring for other New Zealanders.

I want to acknowledge tonight all the carers, paid and unpaid, in this country who do an amazing job in looking after somebody else. Caring is work; whether it is paid or unpaid it is work, and often very difficult work. It is often undertaken by women, in addition to everything else that they are doing. But I also want to acknowledge tonight the families who have worked so hard to get justice and to challenge discrimination. That has led to this bill, but, sadly, this response is flawed and limited.

It is a limited response because it limits who can access payment as a family carer. It talks about “very high need” and “high need”—the definitions are still unclear, and, apparently, to be further worked on. Looking at the bit of the regulatory impact statement that does have some information in it, it would seem that at least 3,800 families are excluded because of those definitions.

The extra cost of including those people, as my colleague the Hon Maryan Street indicated this morning, could be as little as $16 million. It is about priorities. It is about priorities. Do we want to put more money into private education, or do we want to fund people who care for their family members? It is also about the Government having the resources to do important social measures like this one. I recall—as do many others, I am sure—that this National Government deliberately reduced the ability of the Government to pay for initiatives like this by cutting tax rates for the wealthiest New Zealanders and reducing Government income as a consequence. So it is a limited response.

It is also limited because the payment that family members will get is potentially lower than that provided to comparable support service workers. I would acknowledge—one positive thing in this bill—that those workers have been deemed to be employees, versus a possibility of them being given an allowance or being employed under a section 88 notice under the New Zealand Public Health and Disability Act. But these family employees can still be discriminated against. They can be paid less than other carers who are not family members and who are doing a comparable job.

People on this side of the House believe in equal pay for equal work, and this includes the situation we are talking about tonight. We know across the House that that concept is not one that the Government believes in. We have just recently seen youth rates introduced, which clearly indicates that it does not believe in equal pay for equal work. Why is work done by family members of less value? Why should it be paid less? If we had had a select committee process, that is one of the sorts of issues that could have been discussed and that the people doing the work could have had their say on.

The bill is a limited response, but it will also extinguish the right to challenge discrimination under the Human Rights Act, and that is a very serious loss indeed. There are many questions that this bill raises. We have tried to raise those questions today in this House, but the process is fundamentally flawed. Instead of a collaborative process, as was offered by Opposition parties, the Government has rammed this through urgency without full information. Everybody, I think, who is listening to Parliament now knows just how inadequate the regulatory impact statement is—it is full of pages like this with no information. That is disgusting. This should have gone to a select committee, where those questions could have been answered. We should have had the information. This has been rushed through under urgency without full disclosure. We got the regulatory impact statement only today, so it is not a surprise that people are questioning the Government’s motives.

I would like to start my final speech on this New Zealand Public Health and Disability Amendment Bill (No 2) tonight by acknowledging the fourth respondent, Laurence Carter, and the first respondent, Susan Atkinson, who have both died in the process of this coming to Parliament. I want also to acknowledge those of you out there who have been fighting for your family and your home and also for the rights of so many others in this country. Your work is something that we should respect, and I share my colleague Catherine Delahunty’s sense of disappointment and shame in our system for not having acknowledged your need and acknowledged your rights under the law, which made you have to go through the Human Rights Review Tribunal, the High Court, and then the Court of Appeal to have it acknowledged that, actually, you had the right—you had the right—in our law to be paid and acknowledged for the caring work that you are doing, which is saving all of us in our society and is benefiting every one of us. I want to deeply acknowledge you here tonight in the face of this terrible bill, which is actually undermining that right that was existing in law.

This Government has stood up and told us that we should be proud of this bill and that we are the third country in the world to do this. Actually, no. Our law, our courts, told us we were doing that. Our law gave that right. Our policy was out of step with the law because that right existed in the law, and the legislation that is in front of this House tonight repeals those rights. There is nothing to be proud of in this piece of legislation.

This bill in its intent confirms that people will not generally be paid to provide health services and disability support to their families. That is what this bill does. Further, it goes on to say that the families who have lodged complaints to the Human Rights Review Tribunal already, who have those cases lodged with the Human Rights Review Tribunal, can now get only an acknowledgment. The only remedy that they will be entitled to for the discrimination they have experienced through policy is a declaration that the policy is inconsistent with the New Zealand Bill of Rights Act. That is extraordinary. And the families who have not taken a case are now no longer able to take a case. Basically, we are saying that there is no right of redress in this country for this discrimination. That is a shameful, shameful act towards the people who are making so much difference, and towards the people living with the disabilities, who are fighting such barriers to get their ability to participate in this society—and that requires care for some people. The right to have choice over who is going to provide that care is surely a fundamental right.

In response to this legislation I have heard on Facebook from people with disabilities who are feeling devastated by this and who are feeling as if they are losing hope, because they had the convention, we had a sense of progress as a country in a commitment to human rights for people with disabilities, and we now have a disability commissioner. And now along comes this piece of legislation that undermines that very right and that tells them that, actually, our Government thinks its current accounts or its books matter more than their ability. The Government says this is too expensive, but those families cannot afford this burden. We as a country can. Those families cannot afford to carry this burden any longer, and they should not have to. It takes us nothing as a country to do it.

I am really pleased, actually, to be the final speaker in the third reading of the New Zealand Public Health and Disability Amendment Bill (No 2), because there seems to be one fact that really has got lost in the Opposition’s argument. It is saying that parents who care for disabled adult children are out there losing hope, but the simple fact is that this is the very first time a Government is paying them—$23 million. This side of the House is going to pay those parents, when Labour and the Greens never paid a penny, and that is the guts of it—not one penny. So some time in the future, if you get to be in Government, then you make the commitment to pay every single parent to look after a child, an adult, a parent, a spouse—actually, every child full stop—and then we will see where the country is. Thank you.