Transcript for
Improving the rights of parents with intellectual disability
Miranda Bain (00:00): Separating a baby from their mom 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.
Narrator (00:17): Welcome to the Emerging Minds Podcast.
Dan Moss (00:23): Hi, everybody, and welcome to today’s podcast. My name’s Dan Moss and I’m really pleased to be speaking today with Miranda Bain. Miranda is a special advisor to the office of the CEO for Courts Victoria. She’s 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 programmes. So there’s much that we can be speaking to with Miranda today. Miranda, thank you so much for joining us.
Miranda Bain (00:59): Thank you. It’s a pleasure being here.
Dan Moss (01:02): 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?
Miranda Bain (01:18): 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. We go about our work because we believe fundamentally that things can change. And whether we do it on an individual basis or an organisational basis or more broadly, everyone can make a difference. And I think to become a human rights advocate, or 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.
(01:55): So I began the Human Rights Advisory Committee, which then became the Disability Advisory Committee in 2014. It was a bit daunting, frankly, because the request was large and the gaps were huge. And so how do you 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 rule. So if you acted as a litigation guardian, you would then not have a cost 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 a litigation guardian. And that put people who needed support from a litigation guardian in whatever the matter is, that put them in an extreme disadvantage.
(02:57): So that changed to 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 work. So each one of these things that we implemented takes a period of time.
Dan Moss (03:11): 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?
Miranda Bain (03:22): 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 mom and dad because really the baby was deemed to be at risk mostly because the parent had an intellectual disability is fundamentally wrong. Also, it’s a very incorrect assumption and it had dire consequences.
(04:06): 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 position 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.
Dan Moss (05:16): 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 children removed.
Miranda Bain (05:30): 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 theme. They thought everything that they were doing was right, which is correct. If they came from the Royal Women’s Independent Unit, they had been taught everything that you could 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 mom. It also wasn’t known to the Royal Women’s Hospital if you had your baby there. So you can see how unequal this conversation would be.
Dan Moss (06:19): Miranda, some of your work has been about changing attitudes and practises in the ways that we work with parents with intellectual disabilities in ways that support and nurture children in the best possible ways.
Miranda Bain (06:33): 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 child care 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 faces, everyone wants the same thing. They want the baby to flourish, they want the baby to grow in a supported environment. Moms and dads do, child protection do. 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 mom and dad.
Dan Moss (07:42): And I understand that you were guided by some research out of Canada in the 1980s and in particular the step-by-step programme developed by Professor Maurice Feldman for parents with intellectual disability.
Miranda Bain (07:55): So what Maurice Feldman found was that moms and dads who had an intellectual disability who went through the step-by-step programme in a contextual learning environment, so they learned what to do in the 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 moms who were part of the step-by-step programme 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 new learned skills.
(08:44): One of the things that we found was that people kind of thought that a parenting is innate, and we know that 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 neglect or be hurt or whatever the underlying anxiety is. 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 mom. And everyone else that becomes a mom 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 in Australia because we run a pilot such that they can really raise their babies, and that is the better outcome in my view.
Dan Moss (09:56): 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?
Miranda Bain (10:06): So I came across a programme called HoPES, which is run by the Tweddle Hospital in Footscray, what’s known the old sleep hospital. And they ran a HoPES programme. And with the former CEO, Jacquie O’Brien, we went to the Department Health and received funding with Barwon Health to run a pilot last year in July in the Barwon area. But the outcome was that the people who participated in that programme, they kept their babies. Up until then, it was very likely that they would’ve lost them to the system. And because of the broader charter of rights for people with a disability, we are in a great transition where research is actually demonstrating that there is a shift in perception from the deficits, parents’ capacity to what can make it work for them. And that is around the supports that they need to raise their children. I think that’s the critical shift globally and it’s certainly impacting your barn of what we do here.
Dan Moss (11:09): Yeah. Miranda, I’m really interested in these pilots of the HoPES parenting programme that you ran both in Barwon and Geelong. How did the facilitators work with parents with intellectual disabilities to teach them new skills in supportive and non-stigmatising ways?
Miranda Bain (11:26): So the HoPES programme was run by the Tweddle Hospital in people’s homes with skilled practitioners in the home with child protection. Those skilled helpers were Tweddle employees who have a lot of experience with babies 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 their goal was unification. So how do we keep the baby with the mom and dad? So I think 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 them, the practitioners in the field, I found that they had a great attitude. They would listen very carefully to what the mom and dad wanted. They were very skilled in showing, because of course their training, in Tweddle, is to show inexperienced moms and dads how better to connect with their babies and how better to form a stronger bond with their babies.
(12:39): So one of the things I learned from, again, Maurice Feldman, is that if you had an intellectual disability, you are much more likely to end up in out of care, home in foster care and not experience the love that you would expect, and that’s a reasonable expectation from your own mom and dad. But what Maurice found was that when he was working with these moms 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 failing deficit model, failing to be able to demonstrate those very things of which you have no knowledge of.
(13:33): So one of the things with a step-by-step guide and the things that we found with the HoPES programme 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 baby in that trajectory, learns flourishes because mom and dad 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 bubby is just the best, most awesome, fantastic thing you could ever do. It’s just great.
Dan Moss (14:25): Miranda, it sounds like there have been many allies that you’ve worked with over the journey in the past decade.
Miranda Bain (14:31): 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 were 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.
(15:00): Then the second bit in the consultation process was to make sure that will the six principles that we decided on would be able to be achieved. So what were the principles and then what does that mean? So what do those principles mean involved an enormous consultation process with disability organisations 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 unit said, well, 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, 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?
Dan Moss (15:57): 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.
Miranda Bain (16:09): I’d like to think about transition and change as a topic in this answer 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.
(16:40): So we 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 it is 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 system’s change could be, what is the research showing us, what can we achieve today and what do we do in the future.
Dan Moss (17:33): 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.
Miranda Bain (17:53): What I can say is that I use argghh, A-R-G-G-H-H, a lot in my emails. And as my colleagues say, “Honestly, don’t you here know? Like, honestly? And I go, “I came from a large family, I just think you haven’t explained something properly.” So yes, of course, life is made up of different views and everyone holds their view as a precious commodity. I think if you are that way inclined, then I think that 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, a judgement sit there and he may have already performed an early view about something and then someone comes in and they present evidence. And I love evidence. I really do. It’s why I love academia, researchers, people who go, “Well, I don’t know about that.” I’ve always been able to go, “Well, what are other people say?” This is my belief. “Well, what do other people say?”
(19:06): So you learn in life that people hold onto 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. 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. And it’s neutral. And so, one of the things you learned from working a long time at courts is the neutrality of evidence. You do get subject matter experts coming in and you do rely on them because they’ve got an understanding and a perception, and they’re usually reasonably well-informed. But 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, “Ahh, come on, get out my case. Give us a break. Let me breathe.” Something. “Argghh.” And my dog would to look at me going, “Oh my God, she’s off again.”
Dan Moss (20:27): 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.
Miranda Bain (20:42): It is a quiet revolution within the department, and it’s opening doors and it’s changing practise. 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 an 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, the 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.
Dan Moss (21:40): So Miranda, there are a lot of practitioners working in different spheres and working with different kinds of clients of parents who listen to this podcast. What are the messages that you have for them, particularly in working with parents with intellectual disability?
Miranda Bain (21:56): If you are a practitioner, a professional working in the field, and you are aware that there is a patient or a client who has an intellectual disability and is involved or is about to be involved with child protection, we 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, a critical lesson to learn. And that’s just a fact. So that’s a finding and a fact.
(22:32): 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 woman, or a woman or a man, or parents with an intellectual disability to know their rights. Because one of the things that became very evident is that 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 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.
(23:25): 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 and your psychological wellbeing, well honestly, the next time you’re in bed, you’re not going to question it. And some of the people that we talk to, the parents with an intellectual disability who have lost their babies to the system, are terrified of the system and what it can do to them.
(24:02): The charter allows them to have a voice, to be heard. It’s respectful. It allows for, in a consultational process, for support person to be with them, critical. It allows for easy access information so that they can understand clearly what the system, so that they can express clearly what their 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, he or her been taken away? How do I get them back? Can I get them back?”
(24:47): I guess I’ve said before, I can’t imagine the loss and grief, frankly, that entails. So yeah, everyone, all of us here in this room today, there’s virtual room, we are all a change agent. We can all be human rights advocates. We can always look around. We can always see gaps. We can always see something about it. Never shy away from change. It’s invigorating and it has wonderful outcomes.
Dan Moss (25:15): So for people listening today who are really interested in the charter as a tool, how can they access it?
Miranda Bain (25:21): 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, in the old way, you’d have hard copies available, but I can’t see that happening.
Dan Moss (25:46): Miranda, thank you so much. That is so much fantastic information. Really appreciate your time and for all of the detail that you’ve been able to provide us about your work with the charter and your work for parents with an intellectual disability. Thank you so much.
Miranda Bain (26:03): Been an absolute pleasure. Thank you.
Dan Moss (26:06): So I’m sure you’ll all join me in thanking Miranda Bain. 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.
Narrator (26:38): Visit our website at www.emergingminds.com.au to access a range of resources to assist your practise, 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 Programme.