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:10140. Text is incorporated into the Bound Volume.]CATHERINE DELAHUNTY (Green): It is indeed ironic that this bill the New Zealand Public Health and Disability Amendment Bill (No 2) which supposedly addresses historic discrimination turns out to be a breach of the New Zealand Bill of Rights Act. It suggests poor law at best and it also suggests a deeply cynical attitude to what discrimination actually means. What it means for the status of the Human Rights Review Tribunal will certainly be debated by lawyers and will no doubt end up in more painful litigation. However I just wanted to address some of the arguments in the context behind the bill.I do not claim to know everything about this issue. I have been involved in it only for the last 4 years. I think that rather than blaming each other and talking about who did what to whom let us all acknowledge that Parliament has not dealt well with these families Parliament has not addressed the issue in the past and Parliament has been dragged screaming to this point through the courts. Nobody looks good. Let us just be honest instead of pretending that anybody can hold their head up. None of us can. Why not be real about it?As for compassion no one especially not me thinks that we have a monopoly on compassion. I am sure that everyone in this House knows somebody who has an experience of disability and caring for people with disabilities. But what is interesting is where the action is. If we have all this compassion if we understand Cliff Robinson’s case so well as everybody seems to where was the action? I have been working with Cliff and the families for 4 years trying to get a response and compassion is fine but action is what the families want. Sympathy and empathy are all very well. Action—money to pay your bills in order to live with dignity while your family members also live with dignity—is what they want from us.I think that is what we owe them and that is why this bill does not meet the needs of the people who so bravely went through the court case. They have not all been paid. They have been given an interim payment. They have been told that it might not be until October before they get a remedy. So although they are explicitly protected in the legislation no one else is protected. That is why this legislation is such a serious matter.Let us look at the context behind the Government’s arguments. Apart from the fact that it wanted to protect itself fiscally which is really the only thing that the bill is clear about the rest of it will be debated in ghastly family group debates between the Ministry of Health the district health board and the families themselves who are notalways in the best position to advocate. They bring many stories to the Greens about their ability to advocate complex issues around care with providers. It is not simple. They are the experts but they are treated as if they are trying to rip off the system if they try to get paid for what they do.I am thinking about a family I have been working with. They have a 14-year-old son who has multiple health issues 24/7 care and who has chosen to stay at home. He said this directly to me: “I must stay at home with my family.” He wants his mother to be his carer but in order to do that the income of the family has been drastically cut. So this family may or may not be able to get the money. It will depend on their ability to negotiate with the Ministry of Health and it will depend on whether the Ministry of Health and the district health board think that they are liable and whether they get in this capped amount of $23 million per year. It is very difficult for families to prove that.Because of Government policy towards this there has been a fundamentally suspicious and punitive approach towards people caring for family members. It is as if they have to be spied upon because they might be ripping off the system rather than acknowledging that what they are doing is a really really important job. It has cost them in many cases their own health and their mental health.But one of the Government’s arguments is that families should do it for nothing. The debate was about natural care. Minister Ryall continues to say that that is a tenet of the Government’s bill. “Natural care” is a wonderful-sounding phrase. Natural care is what we do when we raise our children. It is what many of us did for our elderly parents when they needed support in their home as they got older. It is what many people do for family members—whānau ora natural care. But there comes a point in natural care where a line is stepped over.The stories that are being told to me about people who live in the other world are not natural care. It is not natural care for adults to have to wash and take care of control manage feed deal with and support some family members. We need to put the person with the disability at the heart of the matter. If the person with the disability chooses to be cared for by a family member many times it is because they feel safer with that person than with carers on a 4-hour roster. People might have a 24-hour roster where the carers change every 4 hours. They have changing carers. They do not know those people all the time so they actually trust—not surprisingly—their family member more.The Government’s argument was that this could distort relationships in families. Of course it could. Power exists in all relationships especially between disabled people and their carer whether they are a family member or an agency. It does not matter. The reason that that is always going to be a risk is that people with disabilities are at the bottom of the heap and their status in our society is the lowest possible status that you can have. Their ability to advocate for themselves is severely limited by the barriers that we create not because they are incapable of articulating their needs but because we are incapable in many instances of giving them the support to say what it is that they need.I met with a number of groups in the last 4 years that said we need change. They said we need a cross-party approach towards the issue of paying family carers so that the person at the heart of this is protected at all times and has the ability to choose. A number of the people I met were saying that their young people want to live independently but they cannot find a safe set-up. I know there are safe independent set-ups. They are more expensive than exploiting someone at home but in my town for example there is a very good trust called the Lifestyle Trust where they have 25 houses where young people and other people some with complex intellectual impairment in particular who want to live independently are supported. But if like Cliff and his family and others they choose to stay at home their carers should be able to earn a living wage.One of the most reprehensible and depressing aspects of the bill is saying that the people who do that work do not have to be paid what the outside carer gets paid. So you are setting up a bizarre anomaly where someone who might get paid 8 hours a day to look after a family member is paid one rate and then the carer will come in and get paid more. I guess you could call it progress because at the moment they are paid nothing but actually what that does to their human dignity is that after all the struggle after all the court cases and after all the bitterness and debate they are still being told: “Your work is not of value. The caring that you do for your family member—you should do it for love.” Love is very much involved in the sacrifice that is being made and love should not be exploited and workers who are family members should not be exploited.That brings us to the issue of spouses. Actually it is up to the disabled person as to whether they want their spouse to care for them not their mother their father their brother or their cousin but this law appears—and we should clarify this with the Minister—to not allow that. It makes an artificial distinction between who can be paid and whether they are a spouse or not. It does many other things as well. It is interesting given that Whānau Ora is supposedly the flagship of the Government along with the Māori Party and it is potentially a liberating policy but whānau ora means that the whole family are involved in an issue and their needs are met and we recognise what families are trying to do together.I think that putting the disabled person at the heart and putting the whānau ora principle into this would have resulted in a very different piece of legislation. It is very very sad to see the discrimination that comes in in this bill which the Minister of course has not mentioned. He has not mentioned the fact that in the bill it explicitly states that people will have no right to complain—none whatsoever—either to the Human Rights Review Tribunal or the courts. So what this bill is saying is: “We have come up with an inadequate solution without proper consultation and now we are going to shut it down—end of story.”No more will people be allowed to complain. No more can they go to the Human Rights Review Tribunal. Those cases that did not get on the list are over and these people will be desperate but no more will they have the right. I am amazed at a law that actually says: “You will not have a right to take any kind of case to the Human Rights Review Tribunal.” I think it is really churlish when they have lost—and they lost a number of times in court—to say: “We are not prepared to even allow people to say any more. That is the end of the story. If you fail to be accepted through the assessment process—no more. Go home. Look after your family member for nothing or put them into a residential care facility that may or may not be acceptable to them but that is the end for you.” More will be said. We are against the bill.