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:10184. Text is incorporated into the Bound Volume.]CATHERINE DELAHUNTY (Green): This will no doubt be my last—the fourth—call. I want to bring the issue back to the silent heart of the issue: a group ofpeople who sometimes have been ignored in the whole debate. We are now on to clause 4 of the New Zealand Public Health and Disability Amendment Bill (No 2).I would like to quote from a young man who wrote to me during this long and painful saga over not just today but the last 17 to 18 years. He sent me his picture and he said he is an adolescent living at home with his parents because that is where he wants to be and he has multiple disabilities. He wrote: “I love being at home and this is where I want to live. If my parents cannot look after me because they do not receive the appropriate support it is pretty obvious that I would have to live at the [X] centre”—and I am not naming it—“and have no future. I don’t want to live there. I am so happy at home with my parents and helpers and my friends visiting me. It is not acceptable for me to be living at that centre. But I want to be independent. I enjoy music and acting and recording my own music. I want to get married and be a dad. If I continue to accept that things take time I will have a lot of success in my life.”He is a young man whose parents are really struggling because they cannot be paid. We are not at all sure that the bill will allow them to be because they were not part of the original case. They have had great difficulty getting the Ministry of Health to recognise their issues. Despite the fact that he is in the group of highest need he is not necessarily going to get accepted. That is why he wrote to me because he wanted me to have this piece of paper when I went to work on this issue. He asked me to keep working on the issue for him.For him being put into respite care or into care to give his parents who are exhausted and broke a break means being with elderly people. He is a teenager. He was 14 when he first started writing to me. I do not know what active imagination it might take but it is not very good for him to be there—it is not very good. I personally have spent quite a lot of time in elder-care homes with my mother who had dementia. It is certainly a challenge but it is certainly worse I think if you are young and have nowhere else to be because you are at such a different stage of life. This young man’s parents are not able to be paid and are constantly in battles over the 24-hour care package whereby his mother has to teach all the carers how to care for him appropriately and they do not get respite because they do not want him to go through this. I am bringing this young man into the room because he should have a future as a citizen under this bill and I do not think this bill gives him and many others sufficient future.You can say “$92 million” as many times as you like but when you are talking about it over 4 years that breaks down to $23 million and then when you are talking about 1600 families that breaks down to $14000 or less per household who might actually benefit from this. Again what kind of active imagination does it take to think what it might be like to be living on that? When you read the frequently asked questions associated with this bill—about the bits that are not in black that have not been blacked out—there are questions about how it may affect people’s benefits if they actually get any financial help through this bill.We are getting texts and email messages today from a lot of worried people. One that came was asking: “If you still haven’t got to the third reading can’t we stop the Royal assent?”. Can we not stop this? This is what people on Facebook are talking about this afternoon. They are saying: “Please Parliament while you have got a chance stop it now.” It is interesting because I do not think the Government might have anticipated that this bill would cause this kind of furore. After all it is just a group of marginalised people who fought for 20 years and have been successfully blocked for 20 years. But they won in court and they forced the Government to do something. Now a lot of people around the country are saying: “Can’t we stop this because it’s not right? We want something better for everybody.”It is a very interesting issue when you receive messages from other people who work for example with people with Asperger’s syndrome and autism. They are thinking listening to this that there may well be a risk to their relationship with the Human Rights Commission. They are worried after what has been done to the family carers in terms of the inability to complain being legislated for who is next. Who else is going to be blocked? Who else is going to be told by the Minister of Health or anybody else that they cannot complain? Is this a new trend? Is this going to threaten the people who are the most vulnerable in their ability to go to the Human Rights Commission?If you look at new section 70A and move right through new sections 70A to 70E we have some very very serious issues around this. Looking at new sections 70A to 70E in new Part 4A I just want to point out that the first sentence says: “The purpose of this Part is to keep the funding of support services provided … to their family members within sustainable limits …”. Sustainable to whom? [Bell rung]The CHAIRPERSON (Lindsay Tisch): I call Catherine Delahunty.CATHERINE DELAHUNTY: I will not take a full call but I do want to finish my sentence. Sustainable to whom? Sustainable to the health budget but not sustainable if you are the people on the receiving end. When we have got a problem like that that is when we start a real negotiation with the people affected. That is when we do not do what we have done up till now. That is why the Green Party members in our third reading speeches will be talking about alternative solutions to this punitive and miserable and mean-spirited approach which should be illegal because it is highly discriminatory. Thank you.