 Kia ora, hello and namaste. My name is Hemant and I would like to start my talk with a couple of quotes from my study participants. That's my biggest wish in life is that she dies before me. No, I would not leave her vulnerable to the state and that is a big admission. Our child should die before us because at least he has gone in front of our eyes and we don't have to worry about how he will live in the future. When a parent wishes that my child should die before me, it tells you a lot. On one hand, it tells you what it must feel like to raise a child with high and complex needs all your life and then suddenly face a prospect of leaving that child under someone else's care. On the other hand, it also tells us a lot about our society and our system. It tells us that our society has failed to understand the needs of these parents. As a system, we have failed to provide necessary support to these parents and most importantly, we have failed to assure these parents that look when you're no longer there, your child will be fine and live a good quality of life. My research aims to understand what these parents want for the long-term future of the children and what we need to do differently to support these families better. So my study participants are the parents, parents of adults with high and complex needs. When I say high and complex needs, these are the children who are dependent upon others for all aspects of their daily life, right from personal care to decision-making. I spoke to 14 parents in Auckland and 18 parents in Delhi and today as part of this presentation, I'm going to share with you some of my key findings. What parents told me and I'm going to focus on three areas. What are some of these wishes? What are some of these worries concerning the children's future and what support these parents consider as valuable and useful for them and their family? So let's start with the wishes. The parent told me that the wish that the child would live in own home or with two or three other people not in a bigger group home with five, six or seven other people and people of their choice not what somebody else decided that you will live with Mary and you will live with John. Parents are saying that my wish is that my child should be able to choose who they live with. Have enough funds to meet all disability specific needs. When you are an adult with high and complex needs, you still might have needs for incontinence pads. You might need lots of extra medication. You might need some aids and equipment to support your speech, to support your mobility and everything cost money. So parents wish that the children will have enough money to meet all these needs. Live a stimulating life doing what they like. Parents told me that they don't want the children to be stuck in front of the telly all day. They want them to be out in the community doing activities and doing what they like not what somebody else decides for them. So what I've shared so far is what parents of both the countries told me. But some Indian parents told me something that was quite unique. I want to share that with you. They told me they would like their child to live in a nice residential institution. Now in New Zealand, 20 years ago, we had de-institutionalization. We closed all those big buildings. But in India, because there is no concept of group homes, there is no such concept as home-based support. So these parents are so desperate. They are saying, I don't care if there are 200 people living in that building so long as there is a place where my child can go after me. Only condition is it should be a nice place where they can live comfortably. So that's the wishes. What are some of the worries of these parents? Child may be abused or taken advantage of. Parents shared some horrific stories of physical and sexual abuse that their own children have suffered or that they have seen other children suffering. And the problem is these children are very vulnerable because they can't even report the abuse if it is happening because often they are non-verbal. So abuse is a really big concern for these parents. Quality of care will not be as good. As a parent, when you raise your child, you are very meticulous, in particular about certain aspect of their needs. But what parents are worried is, when somebody else is doing that care, will they do the same? Will they wash their hair properly? Will they dress him nicely when he goes out in the community? Will they clean between his fingers? So those little minor things parents are worried that it won't be there when somebody else is looking after my child. Surviving not living. Earlier I said parents wish their children to live a stimulating life. Now doing activities in the community costs money. When you go out, you have to pay for the activities. You have to pay for the transport. And parents are worried that I am putting some money from my pocket now but after me, if my child doesn't have this money, they won't be surviving, sorry, they will be surviving but not living a life. And what about Indian parents? Tell me, where will the funds come from? Even the basic needs. Here in Auckland we are talking about money for activities but for some Indian parents, especially those who are from low socio-economic background, they are saying who will provide food and shelter to my child when I am not there. So even that is a worry for them. So you have talked about wishes and worries. What about support? These parents get two types of support. One, what we call is a formal support which comes from the government in forms of the funding or funded services. And the other one is what we call is informal support which is provided by friends, family and neighbours voluntarily without any cost to the parents. So what parents told me about the significance of both these forms of support? In terms of formal support, they said it is significant in all areas for a good quality of life whether it is personal care, whether it is mental and physical health or social and vocational. They said that if there is good government support, then my child can live a good quality of life. And the other significance is family can be family. If there is good government support, then family can just spend the time with the children as family and don't have to worry about being the caregiver, being the advocate, being the behaviour therapist, and they can just enjoy the time as a mother or a father. So good formal support allows that to happen. In terms of informal support, parents said that leisure and recreation is one area where we really value informal support. A friend coming and saying, come on, I'll take you out to the movie. I'll take you to the park today. A neighbour coming and saying, I'll come to your house and we can play some board games. So it is this area of leisure and recreation where informal support parents found it very significant. Human care versus paid care. And this is where informal support is very valuable. When it is paid care, I'm here because I'm getting paid for it and because I have to care for you. But when it comes to informal support, I'm here because I want to and because I care about you. So it is this difference between care for you versus care about you, who you are as a person, and that only informal support can provide. So what are some of these issues with this? Both the supports. Lack of choice, lack of voice. Informal support parents are often not given any choice in what services are offered to them and they don't have a voice in the decision affecting their lives. Lack of disability specific knowledge. Care givers who are working with these children with high and complex needs to understand what they are doing. And why only care givers? Even the health professionals don't know. When a child shows aggressive behavior, they give some extra medication, sedate the child, and he will be quiet. But they don't see that aggressive behavior is the way for the child to say, I need help, which often professionals don't understand. Issue for Indian parents with formal support is corruption and bribery. A lot of funds are allocated often, but hardly anything reaches to the ground. There is no system in between. In terms of informal support, the issue is people are too busy now. Our communities are not as close knit as they used to be in the past. So it's harder to get informal support even from the siblings. Not reliable. If a friend is going to come and shower you and if a friend calls you and says, look, I have a problem with my family, so I can't come today. You can't say I don't care about your family, I want you here now. I can't complain if the quality of care is not good. So it is not reliable for long term. And for Indian parents, diminishing joint family system. Once upon a time, this support was readily available from extended family. More and more families are now becoming nuclear. So this support, which was readily available, has also gone. What I'm hoping that from all this rich information that parents have shared with me, I'll be able to compile it all together and come up with some robust set of recommendations that would help these parents fulfill some of their wishes. And I would like to finish with a word about worries. I'm of the view that real life worries are no different than some letters written on the send. All we need for these worries to be wiped off is a wave. A wave of change. A wave of change in people's attitude. A wave of change in how we deliver our services. And I'm convinced that once that wave of change comes, our parents will be better looked after, and I'm hopeful that my study will be instrumental in creating this wave of change. So do watch this space. Do watch this wave. Thank you. Oh, sorry. Oh, thank you. I've worked in disability sector for last 22 years. Makes me feel like a dinosaur. I worked in India for 8 years and for the last 13 years I've been working in New Zealand disability sector. And when I was working as a teacher in India, parents often raised this concern about oh, I don't know what will happen to my child. But at that time as a teacher in a special school, I couldn't do much with that subject. So now when I decided to do my PhD I said, if not now, I will never be able to address this. So that's why. Yeah. Thank you. Kia ora, Tehfara. Look, there is a wonderful welfare system here. So the parents can get support in practically every aspect of the children's life. Whether it is finding a home for the child to stay. Whether it is, as I said, aids and equipment, like if somebody needs wheelchair, somebody needs hearing aid. So there is fantastic support. And it is available through different ministries. And it's quite complex because it depends on whether your disability is from birth or whether you got disabled as a result of injury. So that decides which agency will play part in. But by and large, I have to say we have got very good support system for these parents. Yeah. Thank you. Thank you. Yeah. So what I did is I created an advertisement and then I sought help from a couple of non-government organizations working in the sector, both in Auckland and in Delhi. So I contacted them. I said, look, I'm doing such and such a study. Here is my abstract. Here is the advertisement. And they helped me circulate my advertisement through the network. So the parents were part of the network. They get to know through these organizations. So that was really helpful. Right. So the criteria was that they have to be the parents of children who are 18 years or over. The children should have high and complex needs. So if somebody was just physically disabled or just intellectually disabled but not requiring support in all aspects of life, then they were not included. And that the parent should be looking after the child at home. So if the child was already placed in a residential institution, then I did not include those parents. So the criteria was 18 years and over high and complex needs living at home with the parents.