Delahunty Catherine: New Zealand Public Health and Disability Amendment Bill (No 2) — First Reading Second Reading In Committee Third ReadingText is incorporated into the Bound VolumeDelahunty Catherine: New Zealand Public Health and Disability Amendment Bill (No 2) — First Reading Second Reading In Committee Third Reading[Sitting date: 16 May 2013. Volume:690;Page:10152. Text is incorporated into the Bound Volume.]CATHERINE DELAHUNTY (Green): Tēnā koe. Tēnā koutou e te Whare nui. It is not great to be here—I think we should be at a select committee I really do. I am very very disappointed that we are not because this is a very serious oversight on an issue that given all these years of angst that have gone on we should be talking about to the people who are experiencing it. And they are watching—never imagine they are not. We are being watched as we speak.I had an email just a little while ago from a carer who said: “I am just appalled that the Government continues its discriminatory and exploitative process against families caring for severely disabled people.” This is what she does: “What part of 168 hours in the week allows for only a maximum of 40 to be funded when you are the parent carer? What do these people think we do? Go out on the tiles? Off duty after 5 p.m. till 8 in the morning? Disappearing every weekend? Should our funding be based on their ivory tower understanding of what happens? How do they get this 18-year-old number? I understand that those under 18 have been allocated funding for care but why can their parents not be funded as any other carer is? Do two parents at home get paid and only one that’s left because of death or because a partner leaves—can that person get paid if they are a spouse? I am just flabbergasted that spouses and partners continue to be exploited.”So perhaps the Minister of Health could answer her question: are spouses able to be paid? We would really like to know because of the situation. “This is outright discrimination.” she says. “Are the Government wanting more legal action? No doubt further legal action could delay things and be their cheaper option.”—which has certainly been a strategy for the last 18 years—“This causes total stress and adds insult to injury with an already very difficult situation. People who care for severely disabled people need all the help that they can get and that they are assessed as needing. These battles are real struggles for the carers who should be helped not hindered. It’s notclear if children catering for parents are allowed payment.” That would be another question that she would like answered. “A very disappointing Budget for people with high or very high needs whom it was supposed to be aimed at. The court action deemed that funding should be for the assessment of allocated funded hours that the Ministry of Health would be prepared to pay to anyone else. Why are they now saying ‘We will pay parents only what we feel like’ but yes anyone else can get paid their fully allocated hours? Why is the start date October? Promises for June were made.”This is really true. After the end of the court case promises were made that there would be a resolution by June 2013. She says: “No one is holding their breath.” They have been through so many promises and so many dates have been set. After the court case a year ago it is not that the Government has chosen to take the opportunity to do something wonderful; it has no choice. It would be in breach of law if it did not act.I also had an email this morning from a very experienced advocate who works for disability groups. He said: “I’m just summarising the policy from what I can read of the regulatory impact statement and I have to say that it gets worse and worse. But don’t worry once this is through there will be heaps of sector resistance.” So that is not good news. People have got better things to do than fight the Government when they are dealing with issues of their own family members or themselves needing care for disability. It is really really disappointing to set up another round of conflict even though the bill the New Zealand Public Health and Disability Amendment Bill (No 2) certainly does its best to shut down any options for complaint. But the human spirit is not like that. The human spirit will not be told it does not have rights and will not be told by any Government that it will put up and shut up and have no right to complain. This is a breach of the New Zealand Bill of Rights Act which is clear. The people out there who are involved in this issue are not after virtually 20 years of litigation going to just give up because the Government says they have to. Let us get real about this. There are going to be more challenges. We have a better path we could follow. We could follow the path of engagement.So let us have a look at the process which is why not holding select committee hearings is such a disaster. What has happened up until now has been pretty bad. There was eventually after the last case was lost and the Government members realised that they would look like fools if there was an appeal—the Government had already spent several million dollars of taxpayers’ money fighting these cases—a decision to have a consultation process. The consultation document was indeed a novel of interesting proportions. It had a sort of Tolstoyan sort ofWar and Peace—mainly war—aspect to it because it made it very very clear that there would be the possibility of taking money away from other parts of the sector if the people who were consulted chose the wrong path. So there was always this implied threat that “Actually you’d better be careful and not want too much you people who already have nothing because if you do it will be taken off other people in the sector”—a very good message if you want to divide and rule what is already quite a divided and difficult sector. People have very different needs and very different experiences of disability and they do not need to be divided and ruled by being threatened.The consultation document actually resulted in a lot of angst and anger from people who did go to the meetings and did want to engage very seriously with the issue. So then there were some options put up around whether Work and Income could manage it. Not surprisingly the families and people with disabilities said: “Oh no we will not become part of the WINZ machine. We will not be treated as beneficiaries. We will not be treated the way beneficiaries are treated. We do not want to. We have enough experience of this. We want to be treated as people doing a job.” And who can blame them? The “WINZ machine” or Work and Income as it is actually called is not acompassionate liberating transformative support machine. Those words have very little to do with what happens on the ground every day in Work and Income. So that is why people wrote that option off. They definitely did not want that option.The other options were around getting an allowance or being an employee. Both of those have fish-hooks in them and also have possibilities. The Government says it claims to have chosen the employee model but in reality when it says that people can be paid less for this if they are carers who are family members rather than being from outside the family this is clearly not a normal employee situation. It is clearly discriminatory and that is where there will be more trouble to come. In reality we have to decide whether we are going to recognise people’s work—and the Human Rights Review Tribunal the High Court and the Court of Appeal have all said it is discriminatory not to—and then we have to pay them a fair wage. It is pretty fundamental that people should be paid a fair wage.So what happened after the consultation? Well after the consultation round there was a silence—there was a deathly silence—which involved people like me being rung up constantly by other groups saying: “Have you heard anything? What’s going on?”. So you know I sent a few questions through to the Minister and “In due course.” was the reply. But there was no information about where we were going. This is the 21st century when sophisticated community consultation processes can be facilitated. But that did not happen. I go back to my own father who always said that “consultation” is a cross between a con and an insult and I do find that has a certain resonance in this case.What happened was that the Government then set up a technical working party. There was considerable effort made by some of the families involved in the litigation as they would have liked to be represented as experts. There is a fundamental issue here which is that these people are experts Minister. They have lived and breathed what you and I possibly have not. They know that there is a need to be fair and reasonable around State money because they have lived with minimal State money for a very long time. They are not expecting a banker’s wage they are not expecting an MP’s wage they are not expecting a consultant’s wage; they want the basics so they can survive with dignity and so can their family. This bill refuses to deliver that. They should have been included in the technical working party and they were not. One person from the carers groups was included and after three meetings there was a shut down. The technical working group was no longer involved. The Ministry of Health went back with the Minister and they started talking about it without involving anyone else.And this bill is the result. This is the result. It is a paranoid fiscally cheap option which could have been so much better if they had kept the door open if they had kept talking to people and kept engaging. I think it would be fair to say that most of us realise that we cannot just write an unlimited cheque on this issue. We have to recognise the constraints. But those constraints should be defined by the human needs of the people. The people themselves should define those constraints not the Ministry of Health and the Minister who have resisted every step of the way and have written into this bill that they basically do not believe that family members should be paid—but if the courts are going to make us do it oh well we will find a cheap solution. The bias the prejudice and the invisibility towards the knowledge and expertise of people with disabilities and their families is now going to be entrenched.With that description of what has happened we now find that the bill will not go to a select committee. So where is the expertise going to come from? Where is the knowledge going to come from for us to make an assessment? We are going to go into the third reading without hearing from the families and without hearing from the people with disabilities who have many ways of speaking about their experience and wouldlike to speak to us. Our job is to listen to those people about how we can fairly meet their needs. Our job is to hear them not to set up a short consultation process threaten them that the Government is going to take the money from another part of the sector and then lock things down while the Government makes up a solution that is fiscally safe for the Government but that perpetuates discrimination to the point at which the Attorney-General says that it is actually a breach of the New Zealand Bill of Rights Act.So where are we going to go with this? Back to court? Are we asking people who are already stretched who are already broken? They are not allowed to go back to court in this bill. They have been told really clearly in this bill that they cannot go back to court. There is no court that they are allowed to take their claims to. As for what the Government has done to the Human Rights Commission and to its status it is very interesting. Presumably the Government believes in human rights and in the Human Rights Commission and the Human Rights Review Tribunal. But it has said that the most vulnerable citizens the most marginalised citizens—who are people with disabilities and their families with high needs—have no access. It is very bizarre that those with money and those at the highest level of society in terms of material wealth will have access to the courts in the land if they get into trouble which strangely they sometimes do with other people’s money but the most vulnerable will not have access to the courts. That is written into the law. I am really ashamed—Iain Lees-Galloway: Mr Chair—Hon Maryan Street: Mr Chair—