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Bridging the sector-based knowledge divide: Towards an integrated approach to FASD - Dr Kerryn Bagley

James Lush, MC, says:

Dr. Kerryn Bagley from La Trobe University.

[audience applauding]

Dr. Kerryn Bagley says:

Thank you, yes, La Trobe, not Federation anymore. I don't think La Trobe would like that.

So, before I start, I'd like to acknowledge the traditional custodians of the land on which we gather today, the Whadjuk people, and pay my respects to elders past and present.

Okay, I'd like to start a conversation about what needs to happen post-diagnosis so that individuals with FASD and their families can access support when they identified a need for it and about some of the possible causes of secondary disability that lie outside of brain dysfunction and how we might start to address them.

And I wanna swing the lens around for a minute away from focusing on managing the individual with FASD to what we as professionals and families and researchers might be able to do within our various services, systems and homes that will have a positive impact on people living with FASD.

So, a number of years ago, I was at the international FASD conference in Vancouver, which I'm sure many of you have been to, and the keynote was Professor Sterling Clarren. Normally Professor Clarren talks about his research, however, this keynote was more reflective, and the gist of it was we have made so many discoveries and advanced so much of our knowledge yet the outcomes for people with FASD are still poor. And he posed the question why.

And I remember I was sitting around a table in the audience with a group of parents and carers and people with FASD from Canada. And their response was essentially this, "When we walk out of this room, most of the professionals don't understand us, most of the services don't support us in a way that we need to be supported, and no one works together. Even these FASD researchers and professionals, they do good work in their particular areas, but they don't seem to talk to each other and they don't seem to connect the dots. They get their small piece but they don't get the picture."

And for me, this was one of those pivotal moments that has stuck in my mind. And I've reflected about it a lot in my clinical work with families and now in my research as an academic.

As Elizabeth Elliott outlined this morning, we've made some really great developments in a range of areas, including FASD diagnosis and clinical interventions. But we also know from families and from the research that individuals with FASD and families have participated in that they often don't feel supported in Australia and New Zealand.

Family support in integrated care is often seen as something that will just happen when professionals refer families to social and community service organisations. The assumption is that families will be able to access a professional who will help them to navigate and coordinate the services that they need, either that or integrated care is not seen as particularly important.

The reality for many parents is when they reach out to services, they often do so with the assumption that service providers will know very little about FASD, and the research on professional knowledge of FASD tells us that they're right.

The idea that we can refer children with an FASD diagnosis to existing clinical services to address the individual components or areas of dysfunction denies the complexity of this condition. It places the primary focus on clinical interventions to improve the individual's functioning and denies the reality that in order to thrive, people with FASD needs support and adaptions in their environment.

I've learned an incredible amount about the science of FASD, FASD diagnosis and clinical interventions from my colleagues from other disciplines and a huge amount from the lived experience of people with FASD and their families.

And I want to tell you a story from my practice that uses approaches and theories from my discipline of social work. I believe it demonstrates the value of integrated care where families and professionals work together in partnership with an FASD-informed lens. It has a focus on the things that can be achieved beyond clinical interventions and draws on an ecological systems approach, that is, a person in their environment, and a social model of disability, which I'll talk a little bit about later.

So I'm gonna tell you a story about Sam.

Sam was age 10 when she was referred to me and she had been placed with her family, who she called mum and dad, as an infant. And her carers had two older biological children. Sam had a really good relationship with her parents, but Sam's carers were feeling really frustrated and burnt out. The family was very financially secure. Sam had always struggled at school, and she had a good relationship and the parents had a good relationship with the current school, but there were increasing tensions.

The reason for the referral to me was suspected FASD, and like of many others that I saw, it focused on the challenges, in particular behavioural challenges outlined here. So, aggressive and violent outbursts, compulsive lying, inappropriate social relationships, difficulty making and keeping friends, disruptive in the classroom, disrespectful to teachers, stealing, truancy, and self-harm.

But Sam also had a range of strengths and likes, which I didn't find out about until I'd spend a little bit of time with her. And she was very friendly. She was incredibly artistic and creative, and she really liked using clay and doing drawing. She tried really hard in most things that she did, and she had a very supportive family, and she had a small obsession for teddy bears.

By the time that Sam and her family had come to me, they'd engaged with a huge number of services, and this is just an example of some of the services that they'd accessed. And I think that that's really a common experience for families with FASD, certainly in my practice experience.

And they tried a huge range of interventions to address some of Sam's behaviour concerns, and you can see some of these listed in the table. She had had cognitive behavioural therapy. They had tried various types of anger management programs, emotional regulation training, talk therapy, mindfulness, but according to her family, nothing seemed to help. And most of the interventions were consequence or reward-related or required thinking through a multi-step process. And when these interventions didn't work, Sam was labelled reluctant to change, willfully defiant, oppositional and difficult.

So if we're thinking about FASD as a label, our kids are labelled already, and they're often labelled with these types of labels, a diagnosis isn't a label, a diagnosis gives us a pathway forward. And her carers felt like they'd been labelled as inconsistent, ineffective, and demanding.

So, very similar to Claire's story this morning about Jacob.

And they felt fed up, they felt like nothing worked, they felt frustrated, exhausted, they felt angry, they felt hopeless, and they felt worried by the time that they got to me. So we had a look at the types of interventions to date. We had a look back at the support that had been employed, and we found that most of the interventions related to addressing particular behaviour concerns, and some related to parenting programs and supports, but they were all at that top end of addressing individual or family.

So we decided to draw an ecological map of Sam in her environment. And this helped us to map out the relationship between Sam and the people in the services and the system who were in her environment, who were in her life.

So, we had Sam, who was feeling pretty down about herself, and then we had her family, who were feeling pretty frustrated, and angry, and sad, but hopeful, and they were very supportive of Sam. They suspected FASD, and they'd done a lot of investigations about FASD online, and they were keen to try something new.

And then at the community level, we had the Scout leader and the Scout group. Sam's dad was very involved in Scouts, and the older children had gone to Scouts, and Sam had tried Scouts, but there were concerns about her safety and her behaviour. So she couldn't go back to Scouts at that point in time.

Then we had her teacher and her principal from Sam's school, and they really wanted to know how to best support Sam. And they actually tried lots of different approaches. They did feel that Sam needed to take some responsibility for her behaviour, and they were concerned that she was well behind academically, but they were willing to learn more about FASD.

Then we had the social worker from child protection system, who was still engaged in the family, the social worker, like many social workers, and I know because I teach them and I work with them, had no understanding of FASD and was unsure of really how it differed to trauma and couldn't really provide extra supports within the system that the system restricted the supports that could be provided 'cause Sam didn't have a diagnosis.

At the service level- and then we had the paediatrician. Sam had not actually been assessed for FASD, despite this suspicions of FASD from her carers and also the child protection system because there wasn't access to FASD diagnosis in her local area. However, a clinic had opened up that was only two hours from her home.

And then, we had various support and community services from the service system level that Sam had engaged with, but were disengaged with them at the present time when she was meeting with me, but she still had and the family still had a good relationship with some of the professionals and had the option of going back.

So looking at the whole picture allowed us to identify possible points of intervention and support and consider the changes that we might be able to make to Sam's environment so it was a better fit for Sam and met her needs. And it helped us to consider how we might work together so that everybody was on the same page, consistency for Sam and an integrated approach.

One of the first things that we, and I say we because we're always working together, in partnership, did is get Sam an FASD diagnostic assessment with the paediatrician and the team. And indeed, Sam was diagnosed with FASD. And we found out from that that Sam had difficulty with executive functioning, specifically planning, organising, predicting, grasping cause and effect, difficulty generalising information, and difficulty with abstract concepts such as ownership, which was interesting considering the history of stealing. She had memory impairments. She had impairments in working memory and recall, which was interesting in relation to the compulsive lying, and possibly confabulation. She had difficulty following multi-step instructions and she had a slow processing pace. In terms of attention, she had difficulty with sustained and focused attention. She had challenges in social skills and communication. She specifically had difficulty reading social cues, so body language and facial expression, which is interesting in relation to developing friendships. And she had challenges with language. She had a low average expressive language - so she was actually in the average range, but she had poor receptive language, so the ability to understand and make sense and make use of what people were telling her. And in terms of academic achievement, she was behind in all areas very but specifically maths.

And so, we considered the interaction of the multiple poor areas of function. And we had a look back at the interventions that had previously been employed, and we considered what would Sam's brain need to do in order to make use of these approaches? And what we realised is that most of them were consequence or reward-based or required thinking through a multi-step process. And we knew that Sam had challenges with executive functioning and doing those types of tasks. In most of the approaches, the focus was on Sam changing her behaviour, but many of them required cognitive abilities and skills in the same areas that she had challenges.

And in particular, the combination of challenges or the patterns of dysfunction would have made it difficult for Sam to make best use of these interventions at that point in time, especially because many of the interventions hadn't taken into consideration her broader environmental context, including some of the drivers of her behaviour, which included the stress that was happening within the family and also at school.

So most of the approaches to date were in line with a more medical model of disability where impairments are managed or treated and the emphasis is on the individual integrating into existing social networks.

So we began to consider Sam's disability from a social model, and in a social model of disability, environments or structures and attitudes need to be adjusted to accommodate integration of individuals. You have individuals with disabilities, and societal barriers may exacerbate disabling conditions. So, people may be born with or acquire impairments. But the idea in the social model of disability, of thinking about disability, is that society creates disability.

So for example, we may plan a team meeting, and the meeting is in the room at the top of the stairs, and John is in a wheelchair, and he can't access the room, if we removed the stairs and replaced them with a ramp or if we had a meeting in a room where there weren't any stairs that he needed to get up to access that room, then John would still have an impairment but he wouldn't be disabled by the environment. And that's the concept of social disability. In many ways, society creates disability for people.

And our starting point with Sam was to consider some of these environmental barriers.

So what did we do? We worked in partnership, and we switched the focus from changing Sam to changing our responses. We focused on preventing problems by understanding the triggers. We began to examine and question whether the behaviours were wilful or a part of brain dysfunction.

Was it that Sam was being lazy or was she actually tired of failing? Was it that she didn't care or could she not show her feelings? And the family elected to temporarily stop all clinical intervention at that point in time, just temporarily.

At home, we did some emotional regulation training, but we actually did it with the parents and de-escalation strategies. And Sam, as I said before, loved bears, we had a bit of an analogy going on, and there was a bit of a plan that the idea was when the family started to see that Sam would become upset, generally what would happen is parents would become upset and things would escalate, and the more they escalated, the more she escalated.

So- [laughs] I'm seeing people in the front going, “uh-huh”.

So we had a strategy of don't poke the bear. So as Sam began to escalate, parents and also siblings would have an idea of what might be coming next, and they would spend a lot of time working on de-escalating the situation for themselves, and thus de-escalating the environment. And we had some really amazing outcomes just through parents deescalating.

We worked with Sam to understand herself and FASD through a positive strengths-based perspective.

If you were in my last session, parent and carer session, we had a conversation about brain diversity. We drew our brains, we normalised brain difference. And we talked about what our brains were good at and what our brains found difficult, and we all did it, and we normalised that process. And I think that that's really important.

We charted and documented all the meltdowns and we did lots of problem solving. We decreased little things like the 'why did you do that?' questions, and we developed clear and consistent family routines.

With child protection, We strongly- with the child protection social worker strongly advocated for extra financial support, and she had to do that very strongly because there are a lot of barriers within the system. Drawing on the diagnostic support report that we had was really important.

And also, we engaged a mentor who also acted as respite because the idea of going away and staying away from her parents for Sam was really, really difficult. So the mentor was also a source of respite.

And I did some training with the social workers on FASD. With the school, we developed a plan on how we communicate together, and Sam's mum was the coordinator of that.

We developed an individual education plan based on Sam's strengths and challenges, but with a focus on making reasonable adjustments to the school environment. We ran what we called an understanding session for all teachers and staff engaged with Sam. And we actually had a lot of, it's really difficult for teachers to make time to do that but we actually had a lot of them come along.

We placed a focus on rebuilding relationships.

And as a part of that, the school adapted the curriculum for Sam, and they had been really reluctant to do that up until this point 'cause they had an idea of where she had to get to. So it took some time to actually work through how we meet Sam where she is educationally at this point in time, not with low expectations educationally, 'cause I think that's really important, that we don't have low expectations of people with FASD, but we meet them at where they're at and we build as we go.

They redesigned things, so a lot of the things that she found hard, the challenging work right at the start of the day, allowed more time to complete tasks, regular breaks, monitored, she was monitored during breaks, and had structured activities at lunchtime because at that point in time, she wasn't able to keep herself safe.

There was a relationship fostered between Sam and the school counsellor.

A really big thing for Sam was that she got delegated a really special role in the school, and that was to be a special helper for the prep students, the younger students, and that really gave her a sense of purpose at school.

And we eliminated homework, which we actually found out when we charted all of those things, was actually the driver of a lot of the outbursts that she was having at home, because her brain was exhausted by the end of the day, she came home to do homework, she couldn't do that. It was a cause of, yeah, frustration for her, but also tension between her and her family.

In the community, we structured activities for developing social relationships and positive experiences. We ran a mini-training on FASD for Scouts, and that was fantastic. We actually sat down also with the Scout leader, and we looked at the diagnostic report, and we looked at how Sam might be able to fit back in in Scouts with the support of her dad.

And we identified strengths, art and drawing, and we built on them, so she began to do pottery, and her mother was a potter and she actually started selling her pottery at a local market with her mum.

And in terms of stealing, we realised the concept of ownership was difficult for Sam. So we increased supervision and developed a relationship with the police.

So some outcomes for Sam, and all of this was related to primarily environmental adjustments, increased positive self-regard and mood, increased opportunities and experience for success, significant decrease in aggressive outbursts at home and at school, and that was a very big thing.

Decreased parental stress from around a nine or 10 for every single session for a number of months, to around a three or four, which is still up a little bit, but that's a really significant for that family.

The school reported increased confidence and skills in managing the behaviour, increased ability to calm down, Sam had increased the ability to calm down after the outburst, and improvements in behaviour at school, minor improvements academically, which we expected, no further stealing, and the expansion of a social circle for her, and she developed a friendship, which was one of her key goals was to have a friend. So that was something that was huge for her.

And no further absconding from school.

So what were some of our keys to success? Because this family very much felt like this was, that they had been the drivers of a very successful process. And I think that ensuring everybody had a good understanding about Sam and her brain, how her brain worked was part of that, working together and having everybody on the same page was essential, and observing, reflecting, and problem solving in preventing future problems.

Now, that doesn't mean that everything was sunshine and roses from then on, but there were significant positive changes for Sam and her family and the school.

So, the situation with Sam and her family presented to me in the beginning is actually a very common one that I saw when I was working in clinical practice, frustration, anger, despair built up over time as a result of lack of understanding and support. And I think it's really important to consider this from a primary and secondary disability perspective.

We know that more than 90% of people with FASD experience mental illness, more than 40% have a disrupted school experience, and more than 60% are in trouble with the law. And we have had the discussion this morning of the Banksia Hill studies, which I can't remember, 36% off the top of my head, young people in Banksia Detention Centre have FASD, and also high percentages of drug and alcohol use.

So this is kind of my model of how I like to think about primary and secondary disability in FASD. All people with FASD have primary impairments related to their brain function, and most people with FASD have secondary disabilities, but are they caused by the primary impairments? And what role can adverse environmental factors have in creating secondary disability? Consider this, if a person has no diagnosis, there's a lack of understanding, no coordinated support, and the interventions are not a good fit for the person, this creates an environment where they're likely to experience intentional or unintentional punishments and have a chronic experience of failure and frustration. And that creates our secondary defensive behaviours. So that punishment, the chronic experience of failure and frustration leads to the adverse psychosocial outcomes, or is part of the reason why we get these bad psychosocial outcomes, which we call secondary disabilities.

So what did we do? We focused our energy on making changes and developing responses at the family, community and service level. We didn't address the clinical interventions at the individual level and we didn't address the system. And in relation to clinical interventions, I'm not saying that clinical interventions aimed to improve behavioural function are wrong. In some cases, clinical interventions are proving to be effective for some kids with FASD. We're continuing to learn about the evidence-base of interventions through FASD research.

What I'm saying is that they're only part of the picture. And I'm also saying before we try them, we must consider whether they're a good fit for the person, otherwise we potentially contribute to experiences of failure and frustration. It's not okay to just give things a go.

Regarding the systems level, professionals changed their practices in relation to Sam, and this possibly influenced their practice with other children and families, which may or may not have a flow on effect for families within those systems. However, we didn't change anything at a systems level that would affect how all professionals within that system work with FASD.

So some challenges going forward, we're getting better at providing professional development for FASD. However, this knowledge can be lost when professionals move jobs, retire, or change roles. How can we embed policy and practice standards for FASD across systems? For example, we know from Professor Elliott's talk this morning that 75% of children in the data collected on incidents of FASD are in the child protection system and that 54% are in foster care. Yet as a social worker, who's worked in this system, I know that there are no practice standards to address FASD in these systems, and we know from most research that most social workers and caseworkers in the child protection system have limited to no understanding of FASD, and it's similar in justice, mental health and education.

Our practice and research frameworks are primarily focused on children, but we know that FASD remains a lifelong condition, so how do we plan for a pivot towards the needs of adults? And I think this is something we seriously need to be thinking worldwide. We need to support adults with FASD, how can we do this? And how can we advance research approaches that enable consumer, i.e., families, parents, carers, people with FASD in collaboration, in research collaboration, to produce applied outcomes so they have services and supports on the ground.

I think answering these questions will help us piece the puzzle together.

Thank you.

[audience applauding]