Improving the rights of parents with intellectual disability

Episode 164 May 26, 2024 00:27:10
Improving the rights of parents with intellectual disability
Emerging Minds Podcast
Improving the rights of parents with intellectual disability

May 26 2024 | 00:27:10


Show Notes

In this episode, Miranda Bain describes her involvement in developing the Victorian Charter of Rights for parents with intellectual disability. Miranda is a special advisor to the Office of the CEO for Courts Victoria and the Chair of the Disability Advisory Committee. She discusses her journey in working with child protection, non-government organisations and parents with intellectual disability to develop the charter of rights, which is now implemented within courts in Victoria.
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Episode Transcript

[00:00:00] Speaker A: Separating a baby from their mum and dad because really, the baby was deemed to be at risk mostly because the parent had an intellectual disability is fundamentally wrong. It's a very incorrect assumption and it had dire consequences. [00:00:17] Speaker B: Welcome to the Emerging Minds podcast. [00:00:22] Speaker C: Hi, everybody, and welcome to Today's podcast. My name's Dan Moss and I'm really pleased to be speaking today with Miranda Bay. Miranda is a special advisor to the office of the CEO for Courts Victoria. She is also the chair of the Disability advisory committee in Victoria. Miranda has a wonderful background in this work and this has been recognised by a nomination for australian of the year. She's also received a Victorian Crime Prevention award for her work in youth diversion programs. So there's much that we can be speaking to with Miranda today. Miranda, thank you so much for joining us. [00:00:59] Speaker A: Thank you. It's a pleasure being here. [00:01:01] Speaker C: Miranda. Your story is such a fascinating one and it's hard even to know where to start. But perhaps you could share with us why it was important for you to see change in the experiences of parents with intellectual disability. And how did this journey begin? [00:01:18] Speaker A: I think every one of us who works in this field, your listeners, myself, we work as change agents. Well, that's my word for it. And we go about our work because we believe fundamentally that things can change. And whether we do it on an individual basis or an organizational basis or more broadly, everyone can make a difference. And I think to become a human rights advocate when nowadays we call them humanitarians, is a privilege. And I wanted to ask people to reflect on that when they're thinking about their role and where they work and the things that they can be doing. So I began the Human rights advisory committee, which then became the disability advisory committee in 2014. And it was a bit daunting, frankly, because the request was large and the gaps were huge. And so how do we even begin to try and reduce barriers to justice for people who are vulnerable and people with a disability? So what we did was we did lots of little things. Well, not little things, but we did things like we changed the Supreme Court rules. So if you acted as the litigation guardian, you would then not have costs awarded against you. The court decided to award costs against state trustees. I think it was from memory, it was 278,000. And that meant that if you were going to act as a litigation guardian, the thought of incurring costs at such a large amount became a reason for not acting as litigation guardian. And that put people who needed support from a litigation guardian in whatever the matter is that put them at an extreme disadvantage. So that changed the Supreme Court rules so that if you acted as a litigation guardian, you didn't get costs awarded against you. That's three years worth. So each one of these things that we implemented takes a period of time. [00:03:11] Speaker C: So, Miranda, if you go back to the start of this journey with the charter in 2014, what were some of the obstacles facing parents with disadvantage and intellectual disability? [00:03:22] Speaker A: I began the advisory committee in 2014, and we began to look at this issue. A woman with an intellectual disability, mostly, but parents with an intellectual disability who were overrepresented in child protection. So the problem that they have is that once you lose your baby to child protection, it is almost impossible to get back and resume the parenting rights. I mean, if you think about it, separating a baby from their mum and dad because really, the baby was deemed to be at risk, mostly because the parent had an intellectual disability, is fundamentally wrong. It's a very incorrect assumption, and it had dire consequences. So over a course of two or three years, we researched extensively that working group had neuropsych, psychologists, allied health professionals, people from the profession, people from courts, people who were actively involved as disability advocates on behalf of their clients who had an intellectual disability. And there were common kind of themes to this. I'll get to those themes in a moment. So what we found was that if your policy decision is separation and the systems are rigid, it becomes kind of like a self fulfilling prophecy. And what was deemed to be correct at the time was that a person who had an intellectual disability, whether correctly or incorrectly, was thought to have it was called deficits. It's not a word that I like, but they were thought to have parenting deficits such that the child or the baby would eventually be always at risk. So having an intellectual disability, when you think about stigma, became like a forerunner for things that would follow. And the women that I talked to for a long period of time had all lost their babies. [00:05:16] Speaker C: So I'm wondering what the impact was. Miranda, for the many mothers with intellectual disability that you spoke to at this time, mothers who might be struggling to understand exactly why they had had their. [00:05:28] Speaker A: Children removed, the impact upon them is devastating. It is often an incomprehensible environment in which to find yourself. Things are happening all around you. You're not really well informed. You don't know why these people are here. You don't know what you've done wrong. That was a recurrent thing. They thought everything that they were doing was right, which is correct. Like, if they came from the royal women's independent unit, they had been taught everything that you possibly know about changing nappies, cleaning the house, washing bottles, bathing the baby. So all that kind of step by step bit around the physical nature, they had down pat. Child protection had a list of other criteria which was not known to the mum. It also was unknown to the wood Rollers Hospital if you had your baby there, so you can see how unequal this conversation would be. [00:06:19] Speaker C: Miranda, some of your work has been about changing attitudes and practices in the ways that we work with parents with intellectual disabilities, in ways that support and nurture children in the best possible ways. [00:06:33] Speaker A: One of the things that we have always done with our advisory committee, we've always kept child protection involved in the conversation because they're at the pointy end. And I have seen since, with the launch of the charter and knowing that the department uses the charter in all training with all childcare workers, that they're changing their attitude towards a parent with an intellectual disability has been quite profound. So I think I take a lot of encouragement from that. And it comes about, I think, because if you kind of strip everything down to its basis, everyone wants the same thing. They want the baby to flourish, they want the baby to grow in a supported environment. So mums and dads do child protection. And because of that, if you can bring the two together to say, well, how do we work together to make this possible? These are the things that we're looking for and these are the things that if we work together and we can see improvements in these areas, then the baby will stay with the mum and dad. [00:07:42] Speaker C: And I understand that you were guided by some research out of Canada in the 1980s, and in particular the step by step program developed by Professor Maurice Feldman for parents with intellectual disability. [00:07:54] Speaker A: So what Maurice Feldman found was that mums and dads who had an intellectual disability, who went through the step by step program in a contextual learning environment, so they learned what to do and then confine in their home. So the context was really important. So he's putting them in a hospital to learn some things. It needs to be a contextual learning environment with child protection and the parents agreeing on what it is that they want to achieve together. And from then on, what he found from memory is that over an 18 week period, all the mums who were part of the step by step program had a 78% retention rate of the new skills that they had learnt. And two years later, they still had a retention of about 50 or 60% of the learned new learned skills. One of the things that we found was that, you know, people kind of thought that her parenting is innate, and we know that that is just, you know, that's not true. It's not an instinct. And I think that that's pretty well agreed. I think you could probably all then accept that both parties want the best thing for the baby. They don't want the baby to be growing up with any sense of negat or be hurt or, you know, whatever the underlying anxiety is. And I think everyone that's listening to this podcast can absolutely take comfort from the fact that parents with an intellectual disability do learn parenting skills, just like I did when I became a mum and everyone else that becomes a mum or a dad. They've learned new skills such that they can look after their babies and toddlers in their own home. But they need support, just like I needed support from extended family. When I have my children, they need support. What we now know is that parents can learn with support, new skills to end Australia, because we run a pilot such that they can really raise their babies. And that is the better outcome in my view. [00:09:55] Speaker C: Miranda, can you tell us a little bit more about the pilot that you ran in Australia? What was the model and what were the benefits to both parents and children who went through the pilot? [00:10:06] Speaker A: So I came across a program called hopes, which is run by the Twainl hospital in Footscray, what's known as the old sleep hospital. And they ran a hopes program. And with the former CEO Jaffe O'Brien, we went to the department health and received funding with Barwin Health to run a pilot last year in July in the Barwon area. But the outcome was that the people who participated in that program, they kept their babies. Up until then, it was very likely that they would have lost them to the system. And because of the broader charter of Rights for people with a disability, we're in a great transition where research is actually demonstrating that there is a shift in perception from deficits, parents capacity, to what can make it work for them. And that is around the supports that they need to raise their, their children. And I think that's the critical shift globally, and it's certainly impacting upon what we do here. [00:11:09] Speaker C: Yeah, Miranda, I'm really interested in these pilots of the Hope's parenting program that you ran both in Bahwin and Jalal. How did the facilitators work with parents with intellectual disabilities to teach them new skills in supportive and non stigmatising ways? [00:11:26] Speaker A: So the host program was run by the Tweddle Hospital in people's homes with school practitioners, in the home, with child protection and those school helpers were Tweddle employees who have a lot of experience with babies and young and young toddlers. So in discussing with them, really the charter, I found that their approach was different. They were there to facilitate what I call a mature environment where the goal was unification. So how do we keep the baby with the mum and dad? So if I think if you go, you know, if you go into these environments with an eye on the future and a belief in what's possible, then wonderful things occur. So in talking with the practitioners in the field, I found that they had a great attitude. They would listen very carefully to what the mum and dad wanted. They were very skilled in showing, because, of course, their training in Tweddle is to show inexperienced mums and dads how better to connect with their babies and how better to form a stronger bond with their babies. So one of the things I learned from, again, Morris Feldman, is that if you had an intellectual disability, you are much more likely to end up in out of care home and foster care and not experience the love that you would expect, and that's a reasonable expectation from your own mum and dad. But what Morris found was that when he was working with these mums who had come out of foster care and out of care home, what he found was that they didn't have any of those clues or cues. So you can imagine the disjunct between going into a child protection environment where you can't display any of those things because you don't know. You actually don't know what they are. And then having been judged by someone else in not being failing deficit model, failing to be able to demonstrate those very things of which you have no knowledge of. So one of the things with the step by step guide and the things that we found with the Hopes program is that you can show parents with an intellectual disability how to bond better with their baby, how to be actively involved emotionally with their baby, to hug and hold and caress and be actively involved with the baby emotionally. And here you go. That's exactly what child protection is looking for. So the child then, for the new bummy. In that trajectory, learns, flourishes, because mum and dad know all the or know how to do all these things of which they had no knowledge of before. And it's wonderful because, of course, being emotionally engaged with your little bubbie is just the best, most awesome, fantastic thing you could ever do. It's just great. [00:14:24] Speaker C: Miranda, it sounds like there have been many allies that you've worked with over the journey in the past decade. [00:14:31] Speaker A: You can't do these things without people agreeing that it should happen. Change is not possible without agreement. And the first people who came along the journey with child protection and then the various neuropsych, psychologists, allied health professional nurses, people who work in the field, and disability advocates. And I think the first thing to get on that journey was agreement, that the assumptions, as I mentioned before, are just inherently wrong. Then the second bit in the consultation process was to make sure that when the six principles that we decided on would be able to be achieved, so what were their principles and then what does that mean? So what do those principles mean? Involved an enormous consultation process with disability organizations and everyone around. What does it mean? And is it possible? Because some of the things that we had been told would be ideal, child protection, legal and child protection policy units, but you just can't do that. So then we'd have to backtrack a bit. I mean, I've always had human rights lawyers working with me on anything that we do. So we go back to the human rights lawyers and saying, well, you know, that's their position. What would be our next position, next best position. So you can hear, it's always a conversation around what's possible, what have we got and how do we keep moving it forward? [00:15:56] Speaker C: I'm really interested in the positive way that you talk about your work with child protection professionals. Tell me a bit about that relationship and what it was that made it work. [00:16:08] Speaker A: I'd like to think about transition and change as a topic in this panzer, because one of the things that you find is that what I might know now might change in two years time, but the system doesn't allow for growth, maturation or learning skills. So the system itself is inherently rigid because really it kind of just says, well, someone who does this, now we're really going to do that again. So they work on precedent, and that's an unfair principle. So, you know, when we began working in earnest with the charter, I found that child protection were just so attentive and so open to change that their commitment to the charter was first class. And I think, you know, it's just one of those wonderful times in history and human rights advocacy where all the stars align and you walk through the door and instead of being told to go away, the door opens and you begin to have the conversation. But I stress again, it's because they have always been with us along the journey since 2016. We've always had child protection in the room, in the working groups, while we tried to really have a look at what a systems change could be. What is the research showing us? What can we achieve today and what do we do in the future? [00:17:33] Speaker C: Miranda, very deservingly. Your own role in the charter was acknowledged with the nomination for australian of the year. I understand that your journey has been one of persistence, determination and diligence. Tell us a little bit about how you've negotiated the twists and the turns throughout this process. [00:17:53] Speaker A: What I can say is that I use arg gh a lot in my emails and as my, you know, as my colleagues say, honestly, don't you hear? No, like, honestly. And I go, I came from a large family. I just think, yeah, I haven't explained something properly. So you. Yes, of course. You know, Elisha's made up of different views and everyone holds their view as a precious commodity, you know, and I think if you're that way inclined, then I think that, you know, that's the position that one takes. On the other hand, if you're that way inclined and you are really holding firmly to a set of beliefs, it's like how things turn out in court. You know, a judge might sit there and he may have already formed an early view about something and then someone comes in and they present evidence. And I love evidence, I really do. That's why I love Pachaedemia. You know, researchers, people who go, well, you know, I don't know about that. I've always been able to go, well, what do other people say? This is what I believe. What do other people say? So you learn in life that people hold on to views because it makes them feel better and safer. And so you have to, when you are trying to encourage a different new belief, you have to just go quite gently and just say, well, look, I know this is. May I ask, or would you consider this? Or perhaps if you could have a look at that. So that's why I think the neutrality of evidence found in research in academia is a beautiful tool for change. You know, it's just. And it's neutral. And so one of the things you learn from working a long time at courts is the neutrality of evidence. Now, you, you do get subject matter experts coming in and you do rely on them because they've got a, they've got an understanding and a perception and they've. And they usually reasonably well informed. But there are times, you know, I live on a farm, there are times when I've just walked out in the paddock and just screamed as I walked around in gumboots going, ah, come on, get out my case. Give us a break. Let me breathe something up. And my daughter would look at me going, oh, my God, she's off again. [00:20:27] Speaker C: But still, these changes were made through the charter in Victoria, so there must have been genuine consensus. I'm thinking that they were changes that were worth making and actually in the best interest of children. [00:20:41] Speaker A: It is a quiet revolution within the department and it's opening doors and it's changing practice. So what you want to do eventually with anything that you decide is a good thing with input and consultation and everything else from affected parties, is that you want everyone to come out of the experience with a new idea about what's possible. And I think that's the thing. That's what your listeners do every single day of their life. They go into environment and they're always tugging out and pulling out what's possible in the next step forward with a patient or a client. And the learnings I think we've got from this one charter is that child protection? It was a time when they were open to change, and they always came into a conversation with unification as being the goal. [00:21:39] Speaker C: So, Meredith, there are a lot of practitioners working in different spheres and working with different kinds of clients and parents who listen to this podcast. What are the messages that you have for them, particularly in working with parents with intellectual disability? [00:21:56] Speaker A: If you are a practitioner, professional, working in the field and you are aware that there is a patient or a client who has an intersexual disability and is involved or is about to be involved with child protection, we'll bring up the charter and have a look at it. So we come away from this journey knowing that parents with an intellectual disability can raise their babies with support and in agreement with child protection. It's a critical lesson, critical lesson to learn. And that's just a fact. So that's a finding and a fact. There is more than sufficient international research that demonstrates this, that fact that they can be taught in their own home to raise their babies from using the charter to encourage a man or a woman or woman, a man or parents with an intellectual disability to know their rights. Because one of the things that became very evident is that you as a parent with an intellectual disability, you have an inherent mistrust of systems and people and health and doctors and courts and lawyers and just about everyone that represents, you know, the system one way, because your interaction with them is so disadvantaged, you are so vulnerable when you are exposed to these systems of thinking and that you have no rights. And the reason why they believe that is because their experience. If your experience of systems and people is such that you don't ever have an opportunity to ask a question or express an opinion, and it's not asked for and you aren't heard, and it has devastating effect on your family and your psychological well being. Well, honestly, the next time you're into that, you're not going to question it. And some of the people that we talk to, the parents when the next video lost their babies to the system, are terrified of the system and what it can do to them. The charter allows them to have a voice to be heard. It's respectful. It allows for, you know, in a consultation process for a support person to be with them. Critical. It allows for easy access information so that they can understand clearly what the system asks, so that they can express clearly what they're thinking is, so that they can have their voice heard in matters which are absolutely, absolutely the most critical issues in their life, which is, where is my baby? Why have they been taken away? Him or her been taken away? How do I get them back? Can I get them back? You know, as I've said before, I can't imagine the loss and grief, frankly, that that entails. So, yeah, and everyone is everyone, all of us here in this room today, this virtual room, we're all a change agent. We could all be human rights advocates. We can always look around. We can always see gaps. We can always do something about it. Never shy away from change. It's invigorating and it has wonderful outcomes. [00:25:15] Speaker C: So for people listening today who are really interested in the charter as a tool, how can they access it? [00:25:21] Speaker A: There's the link to DFFH, child protection. So that link, you can download the digital copy and you can also download the easy access version, and that can be made available to patients and clients on your phone. And you can send a link to them on their phone as well. And we could also let them, you know, any old way to have hard copies available, but I can't see that happening. [00:25:46] Speaker C: Miranda, thank you so much. That is so much fantastic information. Really appreciate your time and for all the detail that you've been able to provide us about your work with a charter and your work for parents with an intellectual disability. Thank you so much. [00:26:03] Speaker A: Been an absolute pleasure. Thank you. [00:26:06] Speaker C: So I'm sure you will all join me in thanking Miranda Bay. What a fascinating and important piece of work that she's been able to provide over the last decade. We've left a link for the charter on our podcast show notes. For those of you who'd like to read it, they can also be found on the victorian state government website under Charter of Rights for parents and carers with disabilities involved with child protection in Victoria. Thanks so much everyone, for joining me. I'm Dan Moss and it's been lovely chatting with you. [00:26:37] Speaker B: Visit our website at dot au to access a range of resources to assist your practice brought to you by the National Workforce Centre for Child Mental Health led by emerging minds. The National Workforce Centre for Child Mental Health is funded by the Australian Government Department of Health under the National Support for Child and Youth Mental Health Program.

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