DR CATHERINE WADE: Welcome, everyone, to today's webinar.  My name's Doctor Dr Catherine Wade and I am Principal Research Specialist at the Parenting Research Centre.  For those of you who don't know much about the Parenting Research Centre, we're an independent not-for-profit research and development organisation totally devoted to supporting parents to help their children thrive.  Personally, I have a history of working with parents with intellectual disability through my work as a clinician-researcher, in developing programs to support parents with intellectual disability, and in the delivery of professional training across Australia, and internationally.  And I'm really pleased to be facilitating today's webinar on supporting parents with intellectual disability to meet their parenting goals. 

I would just like to start by acknowledging the traditional custodians and first peoples of the various lands and waters where we’re located today and pay my respect to the elders past and present.  I would also like to have knowledge any Aboriginal people who are joining with us today.  I’m on the lands of the Wadawurrung people, who are the traditional owners of the lands in the South West of Melbourne, along the Bellarine and Surf Coast where I’m speaking to from. 

Before we begin our discussion I do have a little bit of housekeeping.  There will be a live Q and A session at the end, you can submit your questions via the questions tab in the GoTo Webinar dashboard.  I also want to point out the webinar is being recorded and it will be available in about two weeks.  The AIFS news and the AIFS website, under their webinar banner will also have links to the recording in about two weeks’ time.  There are some related resources that can be downloaded that are associated with this webinar, and you'll find those in the handout section of your GoTo Webinar dashboard.  Then at the end of the webinar, a short feedback survey will open, it would be great if you have a chance to take a few minutes just to complete that for us. 

Before we do begin, I'd like to acknowledge the lived experience of families where a parent has intellectual disability.  We recognise the strength in these families and parents, but we also appreciate that experiences of many parents have been difficult, particularly in relation to the trauma they’ve experienced in their interactions with the systems and services that are set up to support them.  We are committed to valuing the voice and expertise of lived experience, and we are pleased to have Crystal with us today to bring that to our discussion.  I also want to point out that there might be discussions today on sensitive issues, including parent or child experiences of trauma and experiences of child removal at child protection, so please take care of yourselves while listening, and if you're feeling discomfort please take time out for yourself. 

So, today we’ll be discussing how to support parents with intellectual disability to meet their parenting goals.  Parents with intellectual disability are certainly a diverse group, and as a group, they bring a diverse range of strengths and strategies to their parenting.  Parents with intellectual disability can support their children's development and well-being, and like all parents, might need support from their family, from their community, or from services at times.  But they can also experience social and structural challenges that affect their parenting and that might impact their ability or willingness to access supports.  These challenges contribute to misunderstandings about their ability to parent and mainly to critical support needs being missed. 

But evidence is pretty firm now about how practitioners can best support positive outcomes for parents with intellectual disability and their children, and today's webinar will cover a few things.  Firstly, common assumptions about parents with intellectual disability, and how these can impact the types of practises that you as professionals use, and the supports that you offer parents.  We’ll also cover the types of experiences that parents with an intellectual disability often have, and the types of supports that they find useful.  We'll talk about key principles and strategies that you can use in your practice to support parents with intellectual disability.  So, we hope you’ll find this useful in your practice. 

So, the information discussion will be given today will be at a fairly introductory level and is aimed at supporting practitioners who work in the child and family sector, or allied health professionals who might work with a parent with intellectual disability.  But the depth of information that we’ll go into today will be limited.  We might have some discussion of parent’s experiences of the child protection system and child removal today.  Many of the practices we discuss will be relevant to working with parents who engage with child protection services.  However, we won't be discussing in specific detail how to work with parents within that context of child protective services today.  While many of you online today will work alongside all within the context of the NDIS, we won't be covering NDIS funding or services today, we’ll just be focusing on the general practises and principles for working, supporting parents with intellectual disability. 

So, I'm really pleased now to introduce our panellists.  I'm joined today by Doctor Susan Collings, Renee Mills and Crystal Richardson.  Their full bios are available in the handouts tab for this GoTo Webinar.  But by way of brief introduction, Doctor Susan Collings is a Senior Research Fellow at the Transforming Early Education and Child Health Research Centre at the Western Sydney University.  She spent many years working in the community services sector, and she's now in academia and conducts research with parents with intellectual disability and their children aimed at improving service delivery.  Renee Mills is a senior social worker for Community Living Association, where she works alongside parents with intellectual disability, as well as practitioners, to develop models of practice that support these parents. 

And finally, Crystal Richardson, who is the proud mother of three beautiful boys and has lived experience of intellectual disability and navigating the child protection system as a parent.  She has good experience speaking publicly, having recently presented at the Australasian Society for Intellectual Disability Conference and at the Queensland Foster and Kinship Care Conference.  So, welcome to you all today.  So, I might start with you, Susan, if I can, just to give us a bit of a background about what we know from research about parents with intellectual disability, so about things like the prevalence, their strengths and challenges facing parents.

DR SUSAN COLLINGS: Thanks, Catherine, and delighted to be here and coming to you from Dharawal land today, and I'd like to also echo Catherine’s sentiments and pay respects to elders past and present.  So, what we know, so global estimates of the prevalence of parents with intellectual disability are varied, so it's estimated around one to 2%, in Australia.  It's estimated that there are in current terms around 21,000 parents with intellectual disability.  But I guess just to dig a little bit into that for a second, this is based on data about people identified with intellectual disabilities.  So, it misses a big part of the population who haven't been identified or who have cognitive limitations that don't meet diagnostic criteria for intellectual disability, or indeed who don't identify with the label themselves.  So, I guess I'd like to observe that this tells us that we don't actually know how many parents there are with any great certainty, and we can expect there probably are more than 21,000 Australians parenting with intellectual disability today. 

Now, leading on from that, many of these families, it's important to note, are doing just as well as other families in the community.  But if they don't come to the attention of service systems, we simply don't know much about them because most research in the field is done with parents within the service population.  But thinking about what we can glean from the research evidence, we do know with a degree of certainty that parents with intellectual disability and their children thrive when they have a reliable social support network.  So, people who are there when parents need practical assistance, when they need advice about their decisions and choices, information, emotional support and so on.  Key to this is that consistency of support.  It's less about the who than about the how. 

The challenges, Catherine’s already introduced many of these, but there are parents with intellectual disability who need more support.  These are the ones we know most about, as I've said, and they're facing circumstances that would challenge any parent.  So, from things like being poor and socially isolated, to experiencing domestic and family violence, or homelessness.  Many have experienced childhood adversity, and that follows them into their parenting journey and alongside the impacts of trauma they can live with mental illness and substance use problems.  Just two observations quickly: these types of experiences are prone to co-occur, so are themselves part of a patterning of social inequalities and inequities that we know people with intellectual disability are at greater risk of. 

So, we also know these are circumstances that challenge all parents.  So, this is a complex picture.  But this group of parents also, on top of that, encounter negative attitudes and assumptions about their parenting that we'll talk about in a minute, that are quite different to what other parents confront.  They themselves can be challenges.  They're judged more harshly than other parents.  This combination of factors leads to higher rates of child protection involvement.  Statistically, we know the rate of child removal from this group of parents, these families, is in the order of 40 to 60%.  A recent UK study has found that only one in five children remained with parents who had a learning disability or learning difficulty at the end of care proceedings.  In Canada, where parental cognitive impairment was noted in a child protection investigation, the outcome was up to four times more likely to be statutory child removal than any other parent group. 

So, I think that's just an important background, Catherine, there for our conversation about supporting, I guess the importance of supporting and getting in there early, to support parents and their children.

DR CATHERINE WADE: Certainly.  So, you’ve talked about the structural or systemic challenges that face a lot of parents with intellectual disability, and you touched on some of the common assumptions about parents with intellectual disability.  So, just for you to explore that a little bit more and talk about what the impact of some of these assumptions might be, for the way that we as professionals work with parents.

DR SUSAN COLLINGS: Yeah, so true, Catherine.  A lot of this does come down to assumptions, and I think if I could just touch on three key assumptions that way no can really trip parents up and can trip practitioners up is their work with parents.  The first one is an assumption that parents with intellectual disability can't parent children.  So, this comes from a set of beliefs about parents with intellectual disability in general, about them being childlike.  Sometimes you might have heard eternal children.  Now, this can be a potent and dangerous bias, that means that parents with intellectual disability are actually held to a higher standard by the people around them, including workers, and their behaviour is also interpreted differently.  So, you might think about the language that's used to describe their parenting, and sometimes you might think about the way parents with intellectual disability are described as being childish, things like that. 

A second assumption is that parents can't learn or improve in their parenting skills.  Now, this ties to some perceptions that are really long-standing and pernicious, that are about okay, so if intellectual disability’s a permanent condition then surely the capacity for new learning is also similarly constrained, at the very least.  Now, if you believe the parents can't change, you also are less likely to offer them the kinds of chances to learn new skills, also the chances and the openness to show what they know already.  So, that assumption can really get in a way of that support for parenting skills development. 

The third one is the assumption that parents with intellectual disability will abuse or neglect their children.  And in relation for the first two assumptions, this is where pessimism can really creep into practise and decision-making.  So, if you form a belief that children are inevitably at risk of harm because their parent has an intellectual disability, it can seem the most prudent thing in the world to remove children, not provide their parent with information, supported learning and decision-making.  And the trouble is, this belief itself can foreclose a working with parents based on their strengths and assets and abilities, only focusing on what can be seen as their deficits, if you like.  So, that's I guess three key assumptions, Catherine, that I think are worth calling out. 

DR CATHERINE WADE: Thanks.  Yeah, Crystal, I might turn to you now, and I think we've got a slide now that you've put together.  I understand you've been working with the Community Living Association to create a persona that's referred to as Tinker, and creation of this persona is to help people understand the types of experiences that parents with intellectual disability often face.  Can you tell me a little bit about Tinker?  Who is Tinker?

CRYSTAL RICHARDSON: Tinker is a mum with intellectual disability.  We created a mum’s group.  She was created by the mothers who came to mum’s morning tea group at CLA.  She helps us to take the many common experiences of parents with an intellectual disability.  Her strengths and the challenges she faces, and the support she knows, works to help her be the best mum she can be.  Every parent's journey is unique.

DR CATHERINE WADE: Sure is, yeah.  The next slide talks about Tinker's strengths.  Do you want to talk through some of these?

CRYSTAL RICHARDSON: Some of her strengths are that Tinker’s a loving, caring-natured person in everyday life.  She's a proud parent.  She's always 100% committed.  She remains strong for her children, and she's able to ask for help when is needed.  She's able to speak up for herself, sometimes independently, sometimes might need support.  But everyone needs support along their parenting journey, intellectual disability or not.  She sometimes tries new things because that's just important, and it's important for her to try new things because there's different ages in a child's development.  Again, she likes to speak up, and she learns and is committed to accept and adapt to new changes and strengths along the way.  So, that's some of her strengths.

DR CATHERINE WADE: Awesome.  Thanks, Crystal.  I think the next slide talks about some of the challenges that Tinker’s faced over her life and her journey into parenting.  Do you want to run through -

CRYSTAL RICHARDSON: Yeah.  So, some of her experiences is that Tinker is experienced being a grown-up in care herself.  In her early adult life, she experienced financial abuse and homelessness, and the risk of homelessness.  But before this, she's very important, and again, in Tinker's experience, but in everyday life with the parent with intellectual we very often make unsafe friends and then they prey on our intellectual and use that to their advantage.  That also is not a good experience because she can end up in domestic violent situations, and also legal and court systems.  But in her experiences with support, Tinker’s able to - some of her experiences she very often finds in particular instances, people don't listen.  She’s got lots of trauma and anxious and lots of ongoing needs, and very often experiences people very often don't understand, so she can be heard and her voice can be heard.  So, that's some of Tinker's experiences.

DR CATHERINE WADE: Yes, thanks, Crystal.  I'm sure there's lots of people who are listening today who can relate to a lot of those challenges, but also to the strengths that were mentioned on the previous slide.  This is a pretty common picture, which is what Tinker was created to demonstrate.  So, despite some of the challenges that we've just mentioned, that Crystal talked about, we know that it is certainly possible for parents with intellectual disability to have a positive parenting experience, and we know a lot about what works to support parents in developing new skills now.  There's decades of research about this, so we know what to do to help parents to meet their children's needs. 

We know that with the right teaching and the right support strategies that are matched to the learning needs of the parent, parents can help their children thrive.  There are certainly programs and practises and attitudes that practitioners can bring to their work to support parents with intellectual disability.  So, let's hear a bit from the panellists now, about some of these ways of working with parents with intellectual disabilities that are effective.  I might turn to you, Renee.  I'm wondering if you could tell us a little bit about Community Living Association's recent co-design of a framework for parenting support for parents with intellectual disabilities.

RENEE MILLS: Yeah, thank you, Catherine.  Just before I speak, I’d just like to share that we’re in Meanjin on Turrbal and Yuggera country, and very fortunate to be working alongside First Nations communities in our work.  This co-design, we work with young people transitioning from out-of-home care, young people with intellectual disability experiencing homelessness, and we've done that for many, many years.  In that work, we saw from many of those young people, they would become early parents, they’d experience early pregnancy and parenting.  Social workers would work alongside those young people through casework, and parenting was just one element of the many things that they were facing in their experience. 

With NDIS coming into play, we were able to build a team that specifically focused on parenting roles.  I think it's really important to - often parenting was a primary goal of the people that we were working with.  So, be able to preserve a space that workers could specifically focus on that was incredibly important, because otherwise you get pulled away into housing crisis is and all the other structural and systemic issues that people face.  So, last year, we've been engaging in this work for about four years as a focused role and we really wanted to take the time to stop and critically reflect on what we were doing. 

As you were mentioning, Catherine, we have seen parents achieve the most incredible things there are opportunities to walk alongside them.  We wanted to understand what worked.  So, we don't see a lot of this work happening.  It's a gap.  We get enormous amounts of referrals that we can't respond to.  So, we wanted to understand what works.  So, workers were interviewed about their experiences as a starting point.  Because it really was just about us understanding our own practice.  As we moved through that process, some really clear things started to emerge, and we kind of paused and went actually, what would parents say about this?  This is actually a really good opportunity to hear parents' voices and to look at a co-design process for a practice framework. 

So, after interviewing workers, we actually went to parents both individually and in groups, and listened to them about what was important.  And actually, everything that came up in the interviews with workers and the themes we drew up were echoed exactly in the interviews with parents.  Which I think is a testament to the work being very parent-centred.  So, in the ARROS, which is a team within the CLA, we work across individual groups and project work.  So, we believe it's really important to be responding to individuals and to adapt our practice to individual parents’ needs.  So, I think where there's intellectual disability or other co-occurring challenges such as mental health issues, housing, whatever it is, we need to be adaptive in our practice.  So, each person is unique. 

I guess there’s four elements – sorry.  From individual work, we then want to move through to groups where there are themes and parents come together, and we've known how important peer work is for parents and through to project work.  In this practice, we have four domains that came through.  We tested this with parents, so we went back with our language, the themes we drew out, and we had these four elements here.  So, managing emotions, speaking up, navigating systems and parenting.  Parents actually use their language for this model, so it's not advocacy, it's speaking up, it's managing emotions.  We wanted to include parents' voices in the quotes underneath this. 

I think what's really reported is that from our understanding in this work, one can't happen without the other.  It's about readiness and where each person is at.  But actually, parents tell us that they really valued the therapeutic interventions and managing their emotions to enable them to speak up safely in systems, to be able to navigate systems, and to be able to be a parent.  I mean, we all know that managing our emotions as a parent is incredibly important and something that we probably all struggle with at times.  So, for parents where they’ve had lots of life experiences that may mean they experienced trauma, it's been a really important element of the work. 

So, yeah, I think some pretty clear practice principles that underpin this work, and the four domains of practise, but this idea of moving from individual through to group and project work where parents actually get to challenge the systems or to support systems to improve practice, has been incredibly important.  People that we support have been using this to actually educate people in systems, so within child protection or other support agencies, at conferences, to be able to share this practise that we've co-developed.

DR CATHERINE WADE: Fantastic.  Thanks, Renee.  I think we'll touch on a few of the things in that central yellow box there, the parenting practises box.  Because a lot of the points say I reflected in best practise in supporting or any parent, but parents with intellectual disability in particular.  So, Crystal, from your perspective and your experience working with Community Living Association, what's important for you about having a CLA worker to help you be better parents, what did they do with you that helps support you?

CRYSTAL RICHARDSON: So, for me personally, an importance of having a worker, a parenting worker is - long story short, I won't go into too much, but my now six-year-old was removed at four days old.  We didn't have a worker at that time, but a short time after that, the worker we have today, she has walked that journey with not only my now six-year-old, but his older two brothers, who thankfully, and the hard work and the voice I've used, they’re all in one home and they're all together.  So, having to deal with several cares and CSOs, thankfully we only have to deal with one lot.  That was done independently by myself, using my voice at removal time.  But there's underlying issues with that.  There's undiagnosed mental health, PTSD. 

But back to importance of having a worker is six years on now, growing up very fast.  I can now brief and be briefed before contact.  If I'm not going well, she'll say, “Hello, Crystal, how are you?”  And I'll say, “Yeah, I'm all right.”  I never say I'm good, because I believe I'm never good, I'm only ever well or okay, or I'm here.  Yeah, but that debrief and briefing, I find very important.  Also, the emotional regulation we do sometimes.  But at the moment, and we haven't done it for a while, we do - what is it called?  I can't think.  It's like, not breathing techniques, it’s -

DR CATHERINE WADE: Mindfulness.

CRYSTAL RICHARDSON: - mindfulness.  So, we do it with a piece of chocolate or we do three things you can hear, see and smell, for example.  So, they’re some of the things I find helpful.

DR CATHERINE WADE: Yeah, great.  Some of the things that you just mentioned are reflected in this slide about Tinker, aren't they?  So, having a worker along the journey beside you, that's been really important.  Having someone who listens and understands you and walks along the journey with you…

CRYSTAL RICHARDSON: And they – sorry to interrupt.  But it's important to also – having that one worker, you’re not constantly repeating, repeating, repeating your story, which parents with intellectuals often face through all different systems.  Having that one worker, they know your system, they know how you work, and they walk alongside you to support what you're already doing.  So, that's very important to highlight.

DR CATHERINE WADE: Definitely.  Thanks, Crystal.  Susan, I'm wondering from your perspective as a researcher, how do these types of practices that Renee and Crystal have talked about, how do they reflect what we know from research to be best practices?

DR SUSAN COLLINGS: Yeah, Catherine, and look, they've absolutely nailed it, haven't they?  I think these are the messages and themes that the work that Crystal and Renee are presenting, are really soundly based, and I think that’s clear in the research evidence.  So, they are reflective of what we know from the research about good practice, or we might want to call it disability-informed practice.  Those messages again about consistency.  And I think just teasing out some of the things from the research that we know – first of all, we're talking about relationships here, so we're talking about relational practice, and you can't have a relationship without trust. 

So, I guess I’d want to say the very first thing is taking steps and making an effort to build trust with a parent, and recognising all of the experiences, and some of them, the really challenging experiences that Crystal touched on in the work around Tinkers context, that you can’t have a relationship without trust, and recognising that many parents with intellectual disability come with experience of feeling judged, of the deeply traumatic experience of being separated from their child.  So, there may be some really important groundwork to be done to repair that and to be a worker, to be consistent and truthful, making sure the information you’re giving is accurate and also truthful, and you actually go out of your way to show respect for the parent you’re working with both as a parent and as a human. 

I think probably a second thing is communication and I think that’s come up throughout what both Renee and Crystal were saying.  It can sometimes be tough, can’t it, in practice, to know in a busy workload, especially when you’re meeting a person for the first time, how to best communicate with them.  I suppose what the research tells us is find out, ask the person, don’t assume things.  As you said right up front, Catherine, this is a really diverse group of parents in the community, and so find out from them how best they learn and what information, what best way to present information to them.  Make sure you’re checking in that they’re understanding and asking.  It’s all these skills of asking open-ended questions. 

I think the other thing that again, goes to almost a spirit of how you engage with the parent is being optimistic.  We talk about strengths-based practice a lot.  I think it comes with a belief and optimism about parent strengths and looking for these, looking to build on what parents already know, giving them and their families information they need to make informed choices, and then the support to make decisions that are good for them and their children.  Some of the practical things around how you scaffold and support learning and parenting skills.  We know that adult learning principals, making sure that there's role play involved, that parents have an opportunity to try and practice, and try and fail, and learn skills from the most incremental up.  Use praise, break down tasks, give feedback, and most of all make sure it’s a place and a space that parents feel comfortable and safe, and is familiar to them.  That is how you’re going to help parents learn and retain the skill and be able to adapt it to another context. 

I think goal setting is incredibly important, absolutely.  Crystal talked about parents and Tinker adapting, also workers need to adapt.  Parent situations will change, especially if they’ve got other complex circumstances.  So, take a lead from the parents about what’s most important at this time.  You cannot work on a goal that you set if a parent isn’t on board for that, it’s not a priority because they’re dealing with something else that’s more challenging.  It might be about parking something for a time being and helping and supporting a parent to navigate perhaps another system.  It might be that again, thinking about what we’ve heard from Renee and Crystal that right now, learning to cope with difficult emotions is the most important thing.  So, it might be finding some therapy, some trauma therapy.  It might be about dealing with physical or mental health needs.  It might even be about supporting parents to communicate with their child’s teacher. 

But I think the message is about not having your agenda lead the way and that the goals will be achieved by it might again, take time.  So, that’s the next thing I wanted to say, parents with intellectual disability, as you said upfront, Catherine, can and do learn to new parenting skills that can help them and their children flourish, but they may take longer and they may need more intensive support at different times.  Crystal talked about this.  It might be because something’s changed in their lives or because their child’s reached a new developmental stage and there’s new challenges with that.  So, be prepared to come in and out of a parent’s life, and not to see that as a failure.  I think to see that as appropriate, and not just appropriate, but perhaps even essential. 

That idea about a key worker I think is really important and not something that individual practitioners can necessarily deal with, but it’s a system issue that we really need integrated support over the longer term for parents to be able to meet the needs of their children and keep their children in their care.  And if they can’t have them in their care, Crystal’s talked beautifully about the relationship she’s navigating with children who are not in her care.  So, that’s also an important thing, seeing the parent is always the parent, and retaining that the importance of that relationship for them and for their child, or children.  I think that’s probably the main things I wanted to say, Catherine, from the research.

DR CATHERINE WADE: Yes.  Gems there from all of you.  Thanks so much.  I should point out that there is a handout in the GoTo Webinar handouts tab, that people can download.  There’s one of the handouts does include a very light touch overview of some of the tips and strategies and practices that Renee, Crystal and Susan have talked about.  So, folks listening now and in the future can download those as a bit of a reminder of some of the things that you all talked about.  But I’ve got one last question to each of you before we go into the Q and A section of this, and it’s really just to ask you what you think from your perspective is the one main thing, one or two main things you’d like the audience to know about the best ways of working with parents with intellectual disability.  Susan, happy for you to start. 

DR SUSAN COLLINGS: Great.  Again, that message that every parent is different.  Don’t assume you know what the parent's strengths are, challenges are, needs are, who this parent is, find that out.  The second one is reflective practice, like reflect on your own assumptions about parents with intellectual disability.  Just check those.  These are things that individuals can do, organisations can do.  And also call out, I think be brave.  Call out and challenge negative assumptions when you see them.  This is how we change things for the better is by learning alongside each other and learning from parents in particular. 

DR CATHERINE WADE: Awesome, thanks, Susan.  What about you, Renee, what’s the one thing you’d like the audience to know about the best ways to work with parents with intellectual disability?

RENEE MILLS: Oh, look, you’re saying one thing now, but you just preface it by saying one or two things.  So, I'm going to be picking two.  I just want to preference what I'm about to say, like I think we actually need systems change.  We need to actually have change at that level, whether it be around policy, program design.  I think parents talk to us about actually, we want to be able to advocate on our own.  We shouldn't need a worker to go into child safety, a hospital, a school.  We should be allowed to speak up.  So, we need to have disability-informed services across the board.  So, need systems change, we need more programs funded for parents with intellectual disability that can tailor support to their needs. 

I think as individual practitioners, I think the critical reflection is incredibly important.  We would hold that as key to our work.  So, being able to understand our own impact as workers in a parent’s life and how we best support someone.  Because parents can do great things.  So, if people take something away from today, it’s critical reflection.  But actually, is it about holding genuine relationships and partnerships and collaboration with parents?  Is it about deep listening and having great responses to parents, to show that they’re being listened to and that their voice is important and can contribute to change for their children?  And creating great collaboration and partnership across stakeholders, because when people work together, there can be the most amazing changes that benefit children and parents.  But children are the focus here.  Parents want the best for their children.  We all want the best of children in our world.  So, stop and think, and what can we each do to do better? 

DR CATHERINE WADE: Fantastic.  I'm not going to limit you, Crystal, you can say as many things as you like.  What are some of the main things that you’d like the audience to know about the best ways to work with parents?

CRYSTAL RICHARDSON: The first and most importantly, is that – and I was speaking on a parent with lived experience with intellectual, that each and every person with intellectual is a different level and a different way of learning, I guess.  So, for me, personally, I'm high functioning and I can come and do these things and use my voice, and use this as a way of my story and my journey being shared in a positive way, again with support.  Again, comes with the different levels of intellectual, is very often the behavioural side.  So, speaking on a parent’s experience, I think there needs to be lots of training, through and throughout systems. 

I won’t go into it, but I had a personal experience yesterday in an appointment.  One thing you don’t say to me personally is, “I understand.”  Because until you've had your newborn removed, until you've had your family removed, no professional will understand until they’ve walked that journey, and it’s not a nice journey.  But again, with the support at CLA, that's why we started mum’s group, because if we’re associated by another family, we’re guilty of association.  So, mum's group we can come together, we very often support one another.  It’s just a positive way we come together. 

DR CATHERINE WADE: Yeah, brilliant.  Thanks so much -

DR SUSAN COLLINGS: Catherine, can I cheekily add one more with my researcher hat on quickly?

DR CATHERINE WADE: Oh go on.

DR SUSAN COLLINGS: Thank you so much for indulging me.  It’s that we really don’t know enough about parents and children who are not within the child protection system in particular, and I think we’ve got to be alive to that reality.  As researchers, that's a challenge for us.  And I think Renee’s point about partnerships, we need to do much more to hear those stories of thriving and actually, we need to hear children’s stories too.  I think there's a big gap there.  We need to basically be hearing from children about their wishes, wants and their families, and we could do a lot more in that space.  Perhaps that's a plug to funding bodies.

DR CATHERINE WADE: If they’re listening.  Good work.  Well done. 

RENEE MILLS: Sorry, Catherine, you’re going to lose control of us.  I do work with families where they’re not engaging child protection systems.  One of our experiences would be parents with – all parents need support.  Parents with intellectual disability may need different types of support around learning new skills.  But one thing we see is that they’re likely to have other supportive networks around them.  So, family, friends, it can actually step behind them and provide the support that they need.  Obviously, that's just in our practice experience.  So, we do see some really beautiful examples of amazing parenting with adapted support around them. 

CRYSTAL RICHARDSON: And we see it in mum’s group, don’t we?  We have at the moment in mum’s group a mother and daughter.  Mum’s first-time grandma, so very often she brings her beautiful grandson, and he's bobbly at the moment, so we get to talk to him and interact.  Sometimes we get to nurse him and it’s just beautiful to see. 

RENEE MILLS: Yeah, that lovely peer learning that we all got off these mums and dads, and we learn from our peers around how to parent. 

CRYSTAL RICHARDSON: Yeah.

DR CATHERINE WADE: There you go, Susan, not a lot of research on peer support for parents with intellectual disability either.  Another gap for us to fill.  Fantastic.  Look, we’re fine for time guys.  So, if anybody has anything else they want the audience to know, now it definitely the time to dive in before we go to the Q and A.  All good.  All right, well let’s move into the question-and-answer section, and we’ve got a bit of time as I said.  So, we’ve had lots of questions that came through before the webinar today, and some that came through the chat today, I believe.  So, thank you to the audience for those. 

We’ve going to get to some of them shortly, but I did also want to let you know that the panellists are going to be taking some extra time offline after this webinar to answer some additional questions that have come through.  So, the extended Q and A will be recorded and will be available as part of the recording.  So, we’ll talk a little bit, we’ll do some Q and A now, but then the audience will disappear, and the panellists will stay on and answer some additional questions as well.  That will be available within two weeks as part of that recording.

So, the first question I wanted direct to you, Renee, and it's about the term family-centred practice.  Everybody uses the term, people use it in different ways.  But wondering what it means to you when you're thinking about working with parents with intellectual disability?

RENEE MILLS: Yeah.  So, I think something we hear loud and clear from parents across the board, and Crystal you talked about it today, is the importance of hearing parents’ voices and creating space for parents’ voices.  Often, even when parents aren’t connected with child protection systems, they often feel like they haven’t had a voice, or often don’t get the -

CRYSTAL RICHARDSON: Silent.

RENEE MILLS: Yeah, can feel silence.  So, to be parent-centred means to genuinely create space for parents' voices.  As parents we all have hopes concerns fears for our children regardless of the context.  So, regardless of whether our children are in foster care or at home with us, or in kinship care, as parents we want to be heard.  So, I think we talk about being parent-centred, family-focused.  For parents, often their primary goal, as I've said earlier, is to be a good mum, or to be the best mum or dad I can be.  They want to see the best for their children.  I think holding that focus with parents, they have opportunities to talk about what their hopes, concerns, fears are, and to address them.  That may be about navigating systems or things outside of their children, but we always hold the well-being and safety of the child and the family at the heart of that work.  Because it's the parent's goal, and we want children and families to be healthy and happy. 

We know that the children and – sorry, if we think about children that are in care, we know that as children transition through care and into adulthood, they often move back to their family of origin.  So, we’re going to see much better outcomes for our children and young people as they move into adulthood.  If we’ve really supported parents and the systems and networks around them to foster connection and relationship.  So, I think for us it’s about deeply listening, walking alongside a parent.  Trying to build in and build networks around parents that are supportive for them and their children, regardless of that context. 

DR CATHERINE WADE: Thanks, Renee.

CRYSTAL RICHARDSON: Can I just add on that note with what Renee’s saying?  My children are all under the age of 10.  Their biological grandma, my mum, is currently in care, so my mum’s very old school, not into videos or photos, but last week I managed to get a video.  She didn’t want to do it, but I’m very glad she did, because with them being in care, they’re not able to have that opportunity and my older two were very young knowing Grandma, so they have very little memories.  So, last week at contact, I was able to share that video and gave them the opportunity if they would like to make one back.  I only had two out of three, and they both did it.  My eldest is playing clarinet, so we got a video for Grandma playing his clarinet.  My youngest, he got a guitar recently, so they got on there and said, “This is what we’re learning,” and it opens that family connection.  So, it’s been good.

RENEE MILLS: But what was Grandma’s reaction to seeing the video?  Has she seen them yet? 

CRYSTAL RICHARDSON: Yeah, I sent them to her by text, but she reckons she couldn’t hear them, so I've got to play them to her personally.  But yeah, she was happy.

DR CATHERINE WADE: Brilliant.  Yeah, Beautiful.

RENEE MILLS: Can I just add it’s the really simple little things that really work.  I mean, it sounds simple and little, but it’s actually had a huge impact, hey?

CRYSTAL RICHARDSON: Yeah.

RENEE MILLS: So, sorry.

DR CATHERINE WADE: That's all good.  Thanks, Crystal, it’s a great example.  We did have a few questions before the webinar about the parent–professional relationship.  Susan, I'm just wondering if you could touch on that, what that should look like?

DR SUSAN COLLINGS: Yeah, thanks, Catherine.  I think we’ve been talking about this, and it’s about that relationship being an alliance, if you like.  So, where there is a recognition that there is power held, especially when you’re talking about workers that are in early intervention or where there are mandatory reporting and so on, that can frame this relationship.  That needs to be really clearly, I suppose owned and acknowledged, and I think we’re talking about this in terms of the importance of critical reflections on your power in your role, whether or not you’re a statutory worker, is what I'm saying. 

So, I guess what I think the essence, what we know from the research around the essence of this is around the thing I talked about, about building trust.  Fundamental to this relationship is trying to correct for that power imbalance as much as possible.  The things we’ve been sharing today are the exact things that do that.  Being humble as a practitioner is really critical.  Understanding that parents actually know, parents with intellectual disability, like all parents, come with a whole lot of experience and knowledge.  Experiential knowledge if you like.  And that sometimes we as professionals can be not too alert, we can be a little bit deaf to that if you like.  So, taking your time to get to hear what parents know and again, that alliance based on what we’d written about is around the principles of engagement.  That it’s relevant, what you’re engaging around is relevant to both the parent and the worker.  That it’s safe. 

I think we talked a bit about safety and trauma here, and this is critical.  Parents have to feel safe to be able to be open, including that the things they’re finding hard.  We often hear parents with intellectual disability and other vulnerable parents, experiencing vulnerability, described as hard to reach or difficult to engage.  I think recognising and flipping that and saying this is actually about someone for whom this engagement isn’t safe.  It equally might not feel safe for workers and that can be around sometimes workers fears around accountabilities, regulation, some of the risk framing that happens when child safety is under consideration, child safety concerns. 

Also just really making sure it’s timely, so time is always critical.  Understanding, and time, not necessarily in a linear fashion, understanding he parents’ journey.  Understanding the time that practitioners, the preciousness of time.  I guess that really getting to we have these moments to work towards some changes.  They can be very small, but they can ripple.  So, it’s making the time and creating those opportunities for those moments to happen, I think.  I guess they’re to me the key features of what that alliance looks like in practice.

DR CATHERINE WADE: Crystal, just wondering what a difference it makes for you when a worker works with you in partnership, in the way that Susan's just described.

CRYSTAL RICHARDSON: So, having a worker for me personally, even first starting with a family worker all them years ago, I was very angry, I was very aggressive because I was going through that grief and loss of having not my newborn home where he should be.  So, there was lots of emotional regulation over the years.  But having a worker, I'm calm and collected, and I've come a long way to the point I can go on a platform.  And just quickly, recently, I presented with Renee at the Queensland Foster and Kinship Care.  On the way home, I said to her, “It’s very important because when I'm not on a public platform like this, I very often refer to my children as stolen.  But when I'm at the conference or doing this, I refer to my children being in foster care.”  And we had a conversation how I was able to pick that up. 

DR CATHERINE WADE: Yeah, brilliant.

RENEE MILLS: Lots of learnings, hey, it’s been quite extraordinary.

DR CATHERINE WADE: Well, thank you so much, Crystal, for sharing your experiences.  I know it’s not always easy.  We as professionals and academics, we don’t necessarily get asked to talk about our own personal experiences.  So, it’s been invaluable for us to hear and hopefully for the audience to hear your lived experience there.  Thank you so much. 

CRYSTAL RICHARDSON: Sorry, to cut you off.  I would like to say on a parent’s level, that we know children don’t come with a manual.  But when you've got a newborn that's been removed, yes, they do, because they come with the law, unfortunately.  So, that's what I have to say about that. 

DR CATHERINE WADE: Yeah, fantastic.  Really powerful messages, Crystal.  Thank you so much.  We’re pretty much at the end of our time.  I just want to say thank you to all of you as panellists, Renee, Crystal, Susan.  It’s been an incredible experience for me hearing your views, your stories and you sharing your knowledge and hopefully, that's been the case for the audience as well.  Thank you to the audience for joining us today and for your comments and questions, and as I said, we will attempt to answer some of those.  I want to thank the communications team and the child and family evidence and evaluation team at AIFS, the Australian Institute of Family Studies, for supporting us in bringing you this webinar today, they’ve been fantastic to work with. 

I also want to mention, thank AIFS and Emerging Minds for bringing this webinar to you today.  As I mentioned, there’ll be a short feedback survey emailed to you after the webinar ends so we’d be grateful if you could take a few minutes to fill that out.  Please, if you’re interested, register for next week’s webinar which is on navigating cultural differences and ethical dilemmas when working with culturally diverse families.  Thank you for joining us, take care and we will see you again soon.

Welcome back.  We’re now in the extended Q and A section of our webinar.  We do have a few questions that have come through the chat today, which we’ll try to address.  The first question I'm going to direct to all of you, Crystal, Renee and Susan, dive in where you like.  But we had a couple of questions that were about parent engagement and how to engage with parents, particularly when parents don’t want to acknowledge that there's a challenge around their parenting.  Yeah, so I’ll throw it over to the three of you.  Who wants to start, Susan?

DR SUSAN COLLINGS: Yeah, sure, thank you.  I think this is a really important question, so I thank people who raised it.  We’ve talked about meeting parents where they’re at and so, I guess that's the first thing to do, is to understand that parent maybe isn’t ready, or maybe is afraid.  I think that again, is important recognising what’s sitting behind that resistance or reluctance.  But you as a practitioner then are working with that, and especially if perhaps your engagement with them is not entirely voluntary.  I guess there's different context, is what I'm trying to get at.  For some services, there's an issue that really demands, needs attention. 

So, I would say the first thing to do is to think what is going on for that parent.  Where might this be coming from, and then I guess to increase or elevate the sense of safety for that parent, so they're not afraid to meet you around talking about those issues.  So, a lot of this is those very soft engagement skills around building trust and rapport with that parent, so they can see that you’re available.  And I think I’d go back to the thing I said earlier, which is about not only meeting them where they’re at, but first of all, addressing something that they tell you is a priority.  So, perhaps they’re not recognising the thing that you think’s a priority, but if you can demonstrate to them, if you show up around something that is important to them, that's really key to you building that rapport. 

DR CATHERINE WADE: It was about the parent-directed, parent goal-directed in that sense, isn't it?  Starting where the parents at.  Yeah.  Renee?

RENEE MILLS: Yeah, look, I think for many parents they have – well, actually, I think for people with intellectual disability, they get messages from a pretty young age, that actually fear from caregivers, parents, family members around potentially parenting in their future.  So, they get messages pretty young, that actually you can't parent, you won't be able to parent, you should never become a parent.  So, parents talk to us about, they'll often say, “Don’t judge a book by its cover.”  So, because we have an intellectual disability, people judge us.  So, I think the soft skills you’re talking about, Susan, is really important.  We often spend a lot of time just building relationships before getting into parenting-specific stuff.  Often it will come up.  If you create space, because it’s so important for parents, parenting things will come up.  So, you focus on that, where they’re at.  I think you’re focusing on what they’re raising with you. 

If we look at their hopes and dreams for parenting, it gives you an opportunity to then start working with that and then unpack.  That may be more tricky conversations you might need to have to try and extend someone's practice or maybe challenging things.  Often, we find engaging in really concrete tasks.  So, this week there's been conversations in our office around a parent who wanted to just learn how to pack a lunch box to go to contact visits with their children.  So, the worker and the parent packed lunchboxes together.  That was a few weeks ago.  Now, every contact, the parent’s packing a lunchbox for their kids.  Yeah, it’s really lovely to see. 

So, focussing on where they’re at, acknowledging the challenges for a parent in meeting with us and talking to us about parenting when they have that experience of feeling judged, and what relational practice do we need to do to meet them.  So, what do we need to do to be accessible and engaging for them?  It shouldn’t be the responsibility of the parent to engage with us.  I think there's that standard stuff that you were talking about in the webinar, Susan, around different standards and actually we need to come to them.

DR CATHERINE WADE: Spot on. 

RENEE MILLS: Is there anything you wanted to add around what we can do as workers, with people as finding it difficult to connect around parenting?

CRYSTAL RICHARDSON: Just check in.  Yeah.  I'm pretty good, I've always had my own contact day.  So, from taking nappies, baby wipes, spare jocks, toilet training.  Now, we’re taking board games and arts and crafts.  My personal contact, I have to be mindful because it’s after school.  I just asked the carer last week, I woke last week having this idea, maybe now in winter I could take hot chips or do a pre-cooked sausage sizzle, and I could do that every three weeks and that could be their dinner.  The carer was open and supportive, so that will be something to look forward to. 

RENEE MILLS: Yeah.  Just being open to suggestions from the parent.  Trusting the parent knows where they want to start working with you.  The parent has ideas what will – can be as simple as asking. 

CRYSTAL RICHARDSON: I'm just lucky, even though my boys are under the age of 10, I encourage them to – I’ll say, “What do you want for food next week?  What do you want for activities?”  Because it’s important that contact’s positive and it’s about what they want to make it positive. 

DR CATHERINE WADE: Yeah, personal choice, important motivator.  Sorry, Renee. 

RENEE MILLS: I just wanted to acknowledge that I'm conscious that there’ll be practitioners that are working in context where this might be hard.  We’re very fortunate that we get to walk alongside parents, but I think if you’re maybe in a context that's say, child protection, where it’s mandatory and you’re needing parents to engage.  But it’s about collaborating with the networks around a parent.  So, who has good relationships, and we can work together to make this work happen.  I think it’s going to be really tricky for many parents to come alongside some of those systems.  Even the secondary services in Queensland.  We know people are really reluctant because they have often had really scary connection with child protection, either as children themselves, or as parents. 

So, because some of those systems are linked to child protection and mandatory reporting, there may be less willingness to connect and engage.  So, draw in the support.  Who else can you bring into this family’s life to offer that support if they’re better placed to build trust with that parent, to support them to unpack some of the challenges around parenting?

DR CATHERINE WADE: Yeah, great point. 

DR SUSAN COLLINGS: Definitely, yeah.

DR CATHERINE WADE: Got another question now about fathers with intellectual disability.  So, somebody’s wanting to know what supports are available for dads with intellectual disability.  So, what we know about dads with intellectual disability.  Susan, I'm wondering from a research perspective if we know much?

DR SUSAN COLLINGS: In one word, no.  I think it’s safe to say that it’s a well-recognised gap and I think that because much of the research, as I touched on, is about parenting and about supporting parenting or about issues with parenting, and the focus really has been on mothers, mothers and children.  So, there's a big gap in the research evidence that we really need to correct.  So, I'm going to hand over to Renee, who can probably talk about parents - fathers.

RENEE MILLS: Yeah, look, we work with young men who become dads and we know that it’s actually a really important of their lives and their identity.  They talk about dreaming of becoming dads.  Just like young women talk about their dreams to become mums.  I think socially we often don’t pay as much attention to that, or we don’t create spaces where dads can actually maybe talk about those hopes and goals.  Whereas it feels like we do talk to young women about that.  We have been trying to create spaces for dads.  So, we do quite a bit of individual work with fathers.  We have seen some incredible relationships fostered between dads and their children. 

I think the nature of the cohort that we’re working with, that sometimes dads may not be around.  So, we have less fathers that we connect with.  But we’re connected with dads.  We have a dads group that meets once a week.  I think coming back to the idea around challenging our own assumptions, is we weren't sure what it would take to bring a group of dads together of different ages, so varying it from early 20s up to maybe 50s.  What would that be like?  Different age groups, are dads going to want to sit around and talk?  Actually, after a few weeks of getting to know each other, the conversations were extraordinarily rich about what do we do to connect with our children.  When we see our kids, what do we do with them?  How do we play with them?  How do we support our kids as teenagers? 

There was this extraordinary role modelling across the generations of dads.  So, we’re starting to see – so, we didn't need to do anything other than support dads to feel safe, comfortable and connected to each other, which is something, but we didn’t need to put practical tasks down, like let’s build a motor together and then talk about parenting incidentally while we’re building a motor.  So, I think Susan you’re right, we need to know more about it, and we need to be really conscious of holding dads in line when we’re talking about parenting, and opening up and creating spaces for dads to talk about their roles as fathers.  Because in our experience, it is really important and they – when invited, yeah. 

Actually, at the last dad’s group, dads were actually saying to us that they hadn't had the opportunity to do that before.  To sit around with other men and talk in their peer relationships, it's actually not something that they were talking about.  So, I think we need to keep our eye on that as practitioners. 

DR CATHERINE WADE: Thanks, Renee.  We have – maybe our final question is from somebody who is interested in the points that I think Renee, Susan or Crystal, you were making this point as well, about the need for critical reflection.  So, the question is: what are some critical reflection questions that we can ask ourselves as practitioners when supporting parents with disabilities?

RENEE MILLS: I mean, I am sure you will have lots to add here, Susan.  I’d probably just like to say that peer reflection is incredibly important.  So, having people around you that can really check, am I being disability informed?  What would trauma practice, that trauma-informed practice say about this?  I just referred to this a moment ago, what assumptions am I making here?  So, what assumptions were we making about how dads connect, or how important parenting is to dads? 

The other one that I would really love to see people checking in with themselves around is what does my organisation or practice context say about this?  What are the hacks of my practice’s context?  Because it’s very difficult in the systems in which we work, too often prioritise parents, because we have such risk aversion and rightly so.  We want to really ensure the protection and safety of children.  But what are the assumptions and what is my context are probably two that come to mind for me?

DR SUSAN COLLINGS: Yeah, I couldn’t agree more.  I think it is about actually something that happens both at an individual level, but in fact, the conversations need to be happening within our workplaces and more broadly across our practices, and we need to do that community of practice building and have really frank and fearless conversations about – I guess it’s thinking about what assumptions are you bringing and when are they showing up.  So, I guess that's the critical reflection, is when you’re under the pump what happens for you in that engagement with the parent?  And when does some of these assumptions and biases, if you want to call them that, come up?  And they’re usually when we ourselves are feeling under threat or under pressure.  So, thinking about that. 

Thinking about what you've tried that worked.  Even if it wasn't with this parent, is there something you've done with another parent, whether or not they had an intellectual disability, that worked really well?  Can you think outside the box and come up with ideas for yourself and others helping?  What worked, and I guess you learn a lot from what didn't.  But I think it's about not pigeonholing this group of parents and their children, but thinking about what do we know works with parents.  All parents, what has worked for you as a professional with other parents you've worked with, and which might be able to be completely acceptable and suitable to a parent you're working with who has intellectual disabilities?  So again, it's about think about the context, the specificity and why you might be finding this particularly challenging.  What is it about this that's getting that response from you? 

DR CATHERINE WADE: Thanks.

RENEE MILLS: I think it’s really important that we celebrate the wins as well.  So, when we’re critically reflecting, let’s focus on the really amazing bits.  Like, what are the amazing wins?  So, you and I presenting together at conferences.  I learned an extraordinary amount from Crystal and being able to work alongside you and the other mums that we work alongside.  So, actually, when we’re thinking about critical reflection, what’s working when it’s working well?  What are those wins?  Even if it’s as tiny as someone taking a really healthy lunch box or having an awesome relationship with a foster carer who then allows you – that you can co-parent together.  Let’s think about those wins.  Little, big, all the incremental wins along the way, because we learn so much from that.

DR CATHERINE WADE: That's a wonderful place to end.  Starting on a positive, ending on a positive.  Fantastic, Renee.  Thank you so much, and thank you everybody.  Thanks, Crystal, Susan, Renee, for being our panellists today and for contributing to this robust conversation.  Thanks also to the audience and thanks again to the team at AIFS, the Communications team and the Child and Family Evidence and Evaluation team for putting this webinar on, we hope you got a lot out of it.  Thank you.