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:10204. Text is incorporated into the Bound Volume.]CATHERINE DELAHUNTY (Green): 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 $14000—the 1600 families—will benefit from that $14000 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 1600—it could have been 5000—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 withouta 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.