The importance of trust and relationship in supported decision-making

Some people with disability need support to help them make decisions about their lives. The ability to make more informed decisions and to have them heard, valued, and supported by others can affect a person’s approach to seeking support in the future. A positive experience can lead people to seek out trusted supporters sooner.

In this presentation from the Safeguarding the Future conference, Kim Roots, Executive Officer of Side By Side Advocacy, explores what supported decision-making truly requires: not just tools and techniques, but time, trust, and a deep knowledge of the person.

Through three case studies, Kim shows what this looks like in practice:

• Robert, whose rapid speech was often dismissed, but who had very clear views about his life
• Rebecca, whose behaviour made sense once her history was understood
• Ralph, whose advocate chose to treat his internet relationship as real rather than overrule his judgement.

About Kim Roots

Kim Roots is the Executive Officer of Side By Side Advocacy, a not-for-profit advocacy organisation based in Parramatta, New South Wales, that supports people with disability to enjoy full and meaningful participation in their community. The organisation specialises in providing advocacy for people with intellectual disability.

Kim has worked in the advocacy sector since 2005, including roles at Family Advocacy and Resourcing Families (now Resourcing Inclusive Communities). She has been a member of several advisory groups and has provided feedback to government on issues impacting the lives of people with disability.

Transcription

Please note that the transcript provided may contain occasional errors.

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Hello, everybody. It’s lovely to see some people in the room that I know and some who I’ve known for many years, and also some people who I’ve never met. So, this is fantastic.

As you all know, I’ll be talking about the importance of trust and relationship in supported decision making. But for those of you who don’t know me, don’t know me at all, or only know me slightly, I thought a little bit of information about the context for my observations might be helpful.

So, I’ve had the privilege of working in the advocacy sector since 2005, I reminded myself from my LinkedIn profile. And that’s when all my experience around supported decision-making started. Although, as was pointed out by others earlier today, we didn’t call it, then, “supported decision-making”; we just talked about supporting people to make decisions. It wasn’t a catch phrase or something that was just discussed in passing.

My first advocacy role was at Family Advocacy, where many of you are from or connected to, and I was the Advocacy and Leadership Development Officer and went on to manage Resourcing Families, which is now Resourcing Inclusive Communities.

My roles at Family Advocacy involved working with families and allies of people with developmental disability to speak up about the best interests of their family member, friend, or ally with disability. To have a positive vision, to imagine more, to imagine better.

I’ve had the opportunity to spend quality time travelling around New South Wales with some of you in this room and be in the homes of people with disability in their families and supporters.

I’ve also had the privilege of helping them think through some big decisions, sometimes by hosting events featuring other fabulous family members or bringing family members together, family supporters and mentors to help think through some of those big life decisions that can seem intractable when you’re on your own.

I’ve had various other roles before joining Side by Side Advocacy, as was mentioned, where I’m working now, where I’ve been Executive Officer for nearly four years. We’re based in Parramatta in New South Wales, beside a river where Dharug people used to meet and fish and share resources. And we specialise in advocacy for people with intellectual disability. So, Side by Side Advocacy started as Citizen Advocacy Ryde/Hunters Hill, at a time when issues with institutions were becoming more widely understood.

Perhaps because of those early beginnings of the organisation, many of the people who receive advocacy support from Side By Side advocacy today spent a big chunk of their lives in institutions like Pete Island, that couldn’t be more segregated from the community if you tried. A small island in the Hawkesbury with a little walkway for people to go back and forth, otherwise locked off from the world.

So, those people are still alive and well, but very disconnected still. Many have few, if any, freely given relationships and have spent many years without meaningful choice and control. Many don’t have any meaningful family involvement in their lives. So, most of the people who come to Side By Side Advocacy for support really benefit from support to make those decisions. Most of the advocacy that happens wouldn’t happen if people didn’t really have the time and support to think through decisions.

But also not just make the decision but follow through on the decision, because a decision by itself isn’t really enough, is it? It’s really just an isolated moment. There needs to be follow-through as well.

Now, I know that my experience is just a blip in the ocean compared to some of you in the room and at the conference. And I’m delighted to hear from all of you, and humbled to have the opportunity to share some of my experience and observations and some insights of my own.

So, for anyone new to supported decision-making, it’s already been mentioned in passing, but how to go about it is likely to vary from person to person and day to day. There isn’t a single approach, and a multitude of factors affect how a supported decision might best be handled. What is needed to support a person with intellectual disability make decisions can vary depending on their age, experience, the nature of the disability, the nature of the decision.

It can vary depending on how they’re feeling on any given day. Are they in pain? Are they anxious? Are they happy? Worried? Excited?

Decisions that involve major, hard-to-reverse change and significant risk, of course, require much more consideration. As was also said earlier, supported decision-making isn’t always brain surgery. Supported decision-making can include just trying things out, using words a person can understand, or a communication method they can understand.

Having a person with intellectual disability have a chance to actually see and touch alternatives. Illustrations can make more sense for some people than words or even photographs. The opportunity to ask questions and be answered meaningfully is also important. A supported decision might also be supported by research of options and the possible implications of decisions being thought through. Role plays are something that we sometimes try out, where somebody is grappling with something, and they can’t quite get the gist of it.

Time to consider is, of course, really important, and really listening to what somebody says. Observing body language, facial expressions, and how a person reacts is also a critical part of some supported decision-making or most supported decision-making.

Listening to the presentation before made me think of another to add to the list, which is fairly obvious. I’m not sure why I didn’t have it there already, but asking probing questions and just making sure of the reason why somebody is making the choice they are can be really helpful.

I remember an example that we had in our organisation. There was a man who was refusing what would be a life-saving medical intervention. It was all explained. He was shown photographs, but he was adamant that he didn’t want that intervention. But a few more questions were asked, and it turned out that he’d known somebody who had had similar apparatus as a medical intervention, but it hadn’t been a short-term thing. They’d had to have it for their whole life.

So, he was saying no to something that he assumed he would have for the rest of his life, without being aware that it was only a short-term intervention, and that he could then go on without that medical apparatus. So, asking questions in different ways, maybe even getting different people to ask questions where it’s really big issue like that and the implications are irreversible, can be a really critical part of all of that.

Now, that list that I’ve gone through is fairly standard. The sophistication with which it is implemented is, of course, going to vary, and how it’s gone about is going to vary. But there are also a couple of other strategies that I thought would be worth touching on that often aren’t. They’re often not considered part of supported decision-making, but it particularly applies to the follow-through, where decisions are being implemented. They can take various forms, and the first one is about providing proof.

So, it could be proof of what’s agreed in the form of some kind of written document. And by written, it could be drawings, it could be something else other than a written document, but some kind of record. Or it could be providing proof to the person with intellectual disability, and I’m talking about those people with intellectual disability in my examples, that you’ve done what you said you would. Now this comes up in one of the examples I’m about to share.

Another tool of supported decision making can be explicit teaching or guidance. And that technique will be discussed, too. But they’re ones that often aren’t considered as just part of that basic list.

But of course, I would suggest that support to make decisions works best when the supporter knows the person well and is also aware of their life experiences. Familiarity is especially important where a person with disability communicates using gestures rather than words.

Each person with disability comes to a decision or a series of decisions after a lifetime of experience, or as we know, sadly, a lack of experience. Barriers to experience can come in many forms and, in the language of SRV (Social Role Valorisation), can form wounds for a person.

So, here are some common examples of barriers. It could be a school experience that hasn’t catered to somebody’s learning needs.

Or maybe low expectations around the person have meant that a whole range of topics have just never been covered, meaning that the person doesn’t have a context that others in the decision-making process have.

Perhaps a support worker or someone else has done for rather than supporting a person to complete a task or role to the extent possible, for whatever reason, sometimes it might be for very well-meaning reasons.

Other barriers include signs or instructions that are available in a form that’s not easily understood. So, decisions might be assigned to others.

Disappointingly, systems limit decision-making and choice, where they only allow for funding to do certain things, or they’re so complicated that it’s very difficult for people to make decisions.

And sometimes there’s been a decision maker or makers in the lifetime of a person with disability, official or otherwise, who’s vetoed decisions and hasn’t listened.

Maybe time was tight, and it was quicker to choose for a person, or maybe a decision was vetoed for very loving reasons because it was seen as damaging or dangerous.

Although some of these barriers have changed over time, we know that many people with intellectual disability miss out on incremental life experiences that many of us take for granted. They miss out to take decisions that are acted on, to try new things and, dare I say it, they miss out on the opportunity to make mistakes. They’re likely to have had a lifetime of barriers to meaningful involvement in decisions.

Today, I’ve been asked to focus on the role of decision supporters and the importance of trust in relationships. Now, I hope I’m not disappointing anybody when I reveal I won’t provide an exhaustive “how-to” list or a how-to guide, just some examples. My examples will be about adults with intellectual disability who’ve experienced a range of barriers to having their voices heard and needs met throughout their lives.

These examples focus on the strategies of advocates and paid supporters, but the same ideas could be applied by anyone. They could be applied by others. I’m certainly not suggesting advocates are the answer. So, as I said at the beginning, I work for an advocacy organisation. People don’t pay for our advocacy. It’s not legal advocacy, just to make that distinction before I continue.

Now, what I’ve observed over these many years, since 2005, is that the approach of decision supporters can impact on a person with disability’s attitude and approach to seeking support for decisions in the future. It can affect how a person with disability is impacted when things don’t go as planned or are difficult.

A positive experience where a person with disability’s decisions are heard, valued, and supported by others can build confidence and trust. It can result in people seeking out trusted supporters sooner when other decisions come up in their lives. It can open up the opportunity to problem-solve around trying something new safely. It can make it more likely that someone can come through what might be seen as a failure intact. It can make it more likely that someone might lose a little, but not everything.

In one of my examples, a person with disability strives for something that seems to those who are supporting him a very bad idea, but they support him in a way that respects his right to good and bad decisions, and keeps lines of communication open into the future. And I’ll be sharing how it takes time to develop trusting decision-making supports.

So, for families and long-time supporters in the room, and that’s, I know, most of you, you may be thinking you automatically have the time factor covered. You’ve been there from birth, after all, and perhaps you do. I certainly hope so.

But are you always with your adult son or daughter, or the person you care about, when a decision is being made? Maybe you’re not always the most appropriate person to assist with the decision. You want to be there. You want to cover everything. But maybe you’re not always the right person to do the asking. Maybe there are decisions, and you’re just not there. And maybe you’re mortal, and decisions will be made in your absence at some point in the future.

So, like everyone else, I’m not suggesting I’ve got all the answers, not suggesting this is easy and not suggesting that there’s only one way or approach.

I have limited time and will share examples that I hope will spark ideas or raise questions that may be of assistance in your unique circumstances. And I’ve tried to pick three slightly different kinds of examples. They’re all de-identified, and I’ve also left out and changed some details. So, they were happy for me to share the story de-identified. I note that the stories do include reference to violence, including sexual violence, but only briefly.

I’ll start with Robert’s experience. Now Robert lives in Parramatta, so that’s a big city in New South Wales. He lives in social housing with his mother and his sister. His mum’s in her 80s. Robert’s disability labels are intellectual disability and autism. Robert’s sister also has an intellectual disability.

Documents suggest that Robert and other family members experienced violence perpetrated by his father, and the family has few financial resources and has experienced intergenerational disadvantage. Robert works at an Australian Disability Enterprise, sometimes abbreviated as an ADE, previously known as a sheltered workshop. He works there five days a week, and he’s proud that he’s the only person in his family who earns an income. He saves a portion of his wage.

Robert’s disability results in him experiencing high levels of anxiety in response to subtle sensory or social changes. He talks very quickly when he’s anxious, so quickly that he’s very hard to understand.

People often dismiss Robert’s articulations as meaningless for that reason. But when Robert is less anxious, when Robert slows down, he can very clearly articulate his wants and needs. A worker at the ADE, where he works five days a week, as I mentioned, was concerned that Robert and his family were heading towards a cliff. It seemed that his housing and support were precarious, relying as they did on his frail mum, and that all meaning in his life came from his work at the ADE.

So, the advocate started by arranging to meet with Robert and his mum. The advocate knew that Robert’s relationship with his mum was really important, and she went about supporting Robert in ways that were respectful of that existing dynamic.

At the first meeting, Robert’s mum did all of the talking. She described her plans for Robert and his sister living together when she died. She said she was happy with Robert’s work focus. She thought that things were under control and Robert would be okay. She was happy for Robert to see an advocate, if that’s what he wanted.

The second meeting was quite different. It was just with Robert. Robert did talk at this meeting very quickly. The advocate could only pick out a few words. She asked him to repeat things so that she could hear. But a couple of those words were ‘sports car’. She took time to stop and listen to Robert. She did ask him to repeat what he was saying if she didn’t understand, and that signal, that she cared what he was saying… I think a lot of us feel embarrassed to ask people to repeat things, and we smile along. But actually, if we don’t understand, that’s not being of much assistance in really assisting. And it mattered to him.

As she listened, Robert’s advocate recognised he had a very clear view of what he did and didn’t want in his life. Robert worked nearby, and he started to drop in to the office on his way home. If he dropped in and the advocate wasn’t there, he would talk to other people, and the team in the office made sure that he got to know other people, that he wasn’t just relying on one person in the organisation, and that he knew that there were a group of people who would listen to him and would take note and would follow up. It wasn’t just one person.

He started staying for coffee. Over time, the speed of Robert’s words slowed, and his advocate learned that Robert missed going on day trips. He mentioned a lighthouse, an uncle, ice cream, death. The advocate threaded together clues and realised that Robert used to go on regular day trips with the support of a beloved uncle, but his uncle had died, and the explorations had ceased without being replaced with anything else. So, Robert had lost that aspect of his life that had given him a real sense of adventure, belonging, and connection, and going out in a car.

She learned that Robert travelled around the city by himself, and he enjoyed that freedom, and he was quite confident on public transport. She also found out he spent time in gaming halls, and that police had become involved when Robert had explored his love of cars by going into car yards and touching the cars and getting in the cars for long periods of time.

He’d also gotten lost on some outings, and he didn’t have a mobile phone, so he had no way of getting assistance when it was needed.

He said he wanted to go on a holiday.

Robert hadn’t been supported to learn conventions of some of the social settings where he wanted to go, and Robert definitely did not want to live with his sister in the future.

Now, Robert’s mum was aware of some of these issues, but with lots of things going on in their lives, she didn’t want to grapple with them necessarily. She disregarded Robert’s preference about housing, said she didn’t want Robert to have a phone because she would worry that he would melt down if it didn’t work. She didn’t want Robert to have a gaming console at home for the same reason, and she revealed she didn’t know how to make them work.

She also blocked services that would help Robert to learn how to use equipment, and she was resistant to support workers because she thought that they wouldn’t understand Robert.

The advocate wondered if efforts to keep Robert safe from meltdowns meant that there was nothing much to do at home, and that’s why he was sometimes going out at night and sometimes going out without support and without a mode of communication.

By resisting supporters for Robert, he didn’t have a chance to do all the things that he wanted to do safely, and that especially related to cars, which had turned out, he was very passionate about. Although he could happily go to a gallery on his own, hanging out in car yards wasn’t so well received.

So, the advocate talked to Robert and his mum about ways he could start to explore those interests, and started small. He had an NDIS budget that he wasn’t using, and she suggested Robert could be supported by someone to share those interests.

It took time to find supporters who were a good fit, who understood Robert’s rights to make choices. Robert met with possible supporters and selected a man who shared his love of cars and could help him navigate that world safely. He could be supported to go to the places he enjoyed and engage in a way that wasn’t breaching convention, in a way that brought him into contact with the law.

Robert’s mum agreed, but then cancelled engagements. The support coordinator didn’t question those cancellations. One time, Robert cancelled an engagement. He was unwell, and the support coordinator questioned that. She was taking all the instructions from Robert’s mum, even though Robert could make decisions; she wasn’t listening to Robert.

Because there was money left in Robert’s budget, the support coordinator was also organising for support workers to do things for Robert that he could do for himself. So, his advocate called this out, noting that some kinds of support can lead to reduced capacity and that Robert is a decision-maker in his own life.

But during this time, Robert kept coming to the office and making plans. His advocate kept lines of communication open with both Robert and his mum. With Robert’s permission, the advocate talked to Robert’s mum about Robert not wanting to live with his sister. It was when Robert’s mum shared her plans with public housing, they came out to do an inspection and was told that actually Robert and his sister would most likely not be able to continue living in the house that was too big for them to continue having it, that his mum started to realise that some of her plans might not work out.

By this time, she had more trust in the advocate that she wasn’t trying to dismantle the family and break down connections, and that Robert was being recognised as part of the family. She became more open to discussing concerns and revealing her own fragility. She revealed that she isn’t good with reading, and she’s anxious around new people.

Then Robert’s ADE closed down. You’ll remember that was the focus of his life. And so the advocate helped with getting a police check for him to go on to work. He wanted to work at another ADE, so facilitated that process so that he wasn’t devoid of things to do.

Now, around that time, outings stopped being cancelled, he got a phone, and now he knows how to use it. He went on day trips that have meaning for him with a fellow that had originally been selected. There’s a record of what Robert wants to happen when his housing circumstances inevitably change.

He now has people in his life who know him and know he has something to say. They know his story. There’s an understanding of what he wants and how he’s best supported. If something goes wrong, there are already a whole range of trusted supporters in his life.

So, as I was saying, in other circumstances, it may not be the advocate doing that questioning, but it’s more the idea of getting things in place, even if you’re not quite ready. Starting to test out local connections, starting to try things to see what works and doesn’t work for a person.

My next example is about Rebecca, a woman with intellectual disability who lives with her family in Hornsby, another suburb of Sydney.

She’s in her late 40s, and she wants to move out of home. She went to a mainstream school in a support unit. Her family is very conservative, particularly her dad. She was referred to Side By Side Advocacy to get help, to share her story with the Disability Royal Commission, and to support her with advocacy needs around that disclosure.

There was no reticence on Rebecca’s part to share her story with the advocate. She told the advocate about having been sexually assaulted at work on more than one occasion. The advocate assisted with sharing this experience with the Disability Royal Commission and with thinking through options relating to the assault.

The advocate’s approach was one of radical openness. She allowed Rebecca to share anything without judgement, but she quickly sensed the benefit of placing limits on engagement. Rebecca was texting and calling very often about all kinds of things, many, many times a day. The advocate responded by placing firm boundaries. She made her role clear.

She asked Rebecca to think about if she needed action from the advocate or was just sharing information. She entered into a communication agreement with Rebecca. Rebecca could text as often as she wanted, but the advocate would only respond once a day unless action was needed.

She also completed a written advocacy agreement that set out what she would do and when. She kept Rebecca informed of progress and ticked parts of the plan off as they happened. She also helped Rebecca understand the roles of others and to retain a group of trusted professionals to support her. This took time. A long journey had begun. Not every connection worked out.

Rebecca was supported to identify a support coordinator that would listen to her and would know what to do. It was discovered that having female supporters of approximately the same age as Rebecca, who were respectful of her as an experienced woman, worked best. She needed time to develop trust and rapport. She found it to be more peer-like.

Now, this was a turning point for Rebecca, who had experienced unsatisfactory relationships with numerous professionals who, in the past, had either responded frantically to all of her communications and then declared themselves burnt out and stepped away, or who just hadn’t responded at all. No one had explained communication conventions or roles, and that explicit teaching, that taking the time to talk that through, made a big difference.

Rebecca increasingly trusted the advocate. The advocate linked her to people with specialist skills in the police force and who had specialist legal experience. Now, this was particularly important as Rebecca could be characterised as an unreliable narrator. Her version of the assaults wasn’t always the same. Anyone who’s had much to do with the criminal justice system knows that isn’t uncommon, and these specialists were experienced enough to know that inconsistency doesn’t necessarily mean that nothing bad happened. They listened to her and didn’t dismiss her.

Now I won’t be discussing the assaults more, other than to note that the experience appears to have had a considerable impact on Rebecca’s preference and the way she interacts with the world. But she hasn’t told her family about the assaults, and is clear that she doesn’t want them to know. Her parents have been unaware of any possible link between the assaults and changes in her demeanour, behaviour, and way she engages.

So, her parents’ judgement and the words they’ve used around her have been ‘unmanageable’, ‘difficult’, and ‘wilful’, rather than recognising there may have been a causative link between the assault and the way she behaved, interacted, what she was communicating. Now the utility of the disclosure now is less significant because of diminished cognitive capacity, in fact, of both parents.

The advocate says Rebecca’s siblings have hinted at some awareness of a negative incident, but not when parents are around. So, reasonably enough, Rebecca doesn’t want to share disclosures of her assault with all her supporters other than her counsellor.

When Rebecca needed to move out of home, she asked the advocate, who’d assisted with a Royal Commission and other matters to assist with this too. I’ve only got 15 minutes to go, so I’ll whizz through, but one of the things that was thought to be really important was talking through with family to the extent possible.

So, when the advocate became involved around the move, Rebecca’s sister had stepped in to assist. It had been assumed by the family that the sister would take a really leading role in support and guidance moving forward. Her sister really does care deeply about Rebecca. It was a fortunate thing that this was tested out a long time before the crisis, because Rebecca had other ideas. She didn’t mind her parents taking a leading role, but she didn’t want her sister telling her what to do. She was at a point in her life where she wanted to have more control.

Also, her sister wasn’t aware of the conventions around supported decision-making. So, she was trying to be efficient and making lots of decisions for Rebecca rather than including Rebecca in the conversations. It wasn’t maliciously done. It was just done due to a perception of urgency.

Rebecca told the advocate about her displeasure, and the advocate offered to run an information session for the family about supported decision-making, about how they could support Rebecca, about possibilities out in the world, and this offer was taken up. She also told them about organisations like Family Advocacy that could assist with capacity building.

It also turned out that the sister had different ideas about Rebecca’s future. She’d lacked awareness of housing and support options, and so had assumed that a group home was the answer.

Now, for Rebecca, of all the things that came out of conversations, it was clear that she didn’t feel safe in a group home. So, the advocate was able to tell the family about the possibility of trialling living alone in short-term accommodation using NDIS funding, and this option is currently being trialled. It’s allowed Rebecca’s team of supporters to see what support she needs, because that hasn’t previously been tested. In the past, family have stepped in when things haven’t gone wrong, so it’s not clear what support Rebecca needs help with.

Recognising that Rebecca’s experience of assault has impacted on some preferences and needs, the advocates also helped Rebecca share enough information for supporters to have a level of understanding. Her needs are now being better met, and explanation is now sometimes given, “Because bad things have happened to me in the past, I prefer, or I want, or I don’t want”, which helps people understand better the dynamic that’s going on.

The advocates also help Rebecca frame behavioural support in a strengths-based way so she can feel good about what’s going on. So, Rebecca does feel anxious. She does get depressed from time to time. Happenings can make her seem what may be perceived as disproportionately concerned about her safety. But rather than any suggestion that supporters need to control her, they’re encouraged to act in a way that helps Rebecca feel safe.

One area where Rebecca needed help was money management. Her dad had been an engineer with a very strong fiscal focus. When money things had gone wrong in the past, she’d been admonished and had her money handling experience cut down. She did have two bills that she paid and did pay them regularly.

Because she paid those bills, she genuinely thought that she had strong money skills and didn’t understand that living independently would involve more complex money handling. It seemed unfair to her, and almost like a punishment when people suggested that she might benefit from some money-handling skills.

So, the advocate framed things differently. She framed the need for learning more about money as ‘skills for the future’. She pointed out that Rebecca had never managed a whole household budget. She also noted that Rebecca had missed out on some training around money management and that this training would fill the gap.

So, after several failed attempts at developing skills with supporters in their 20s, an OT (Occupational Therapist) of about Rebecca’s age stepped in, and things started to improve. Rebecca felt it was again more like a mentor, listening to her and respecting her. Rebecca also did a course called Adulting Like Anything, which has assisted her to develop her skills.

Now, the biggest change in Rebecca, through all of this process of having been listened to and heard, is how she talks about herself differently. She’s coming to feel like people will listen to her and support her. In the past, it emerged that she had very low sense of self-worth. Her sister had at one time questioned the clothing that she wore, which is quite idiosyncratic, often quite heavy for the weather, and often quite uncomfortable.

When it was broached with Rebecca, she told the advocate that she didn’t care about herself enough for her clothing to be important. She did not matter. So, why did her clothing matter? She felt that her sister was asking her to change to please others, rather than being concerned about her.

When the advocate heard this, she reframed the question about clothing to be about picking items that help you feel worth taking care of. So, Rebecca’s currently being linked to capacity-development opportunities like workshops about making decisions. She’s broadening her understanding about how systems work. She’s building confidence and self-esteem. Starting before the crisis has meant that Rebecca’s had more options, more time to develop skills and confidence in her team and supporters.

My final story is about Ralph, and this is actually the story that Jan heard and based her invitation to this conference, so I feel like I need to share it, albeit briefly.

Now, Ralph’s a man who’s lived in segregated settings most of his life. If we were to ascribe labels, we’d say Ralph has cerebral palsy and an intellectual disability. Ralph uses a wheelchair and communicates by using a stylus with his teeth.

Ralph started living away from his family when he was a child. He’s lived out of home care all of his life. He’s lived in an institution. He was assaulted as a child. He’s never worked.

Every time Ralph goes through a plan, they ask him whether or not he wants more contact with his family. Every time he says yes, every time the family declines because they’re too busy. You can imagine what kind of impact that has on him and why it may be that he has a craving for a family life.

He started his engagement with Side By Side Advocacy around looking for a more appropriate place to live. But as his relationship of trust with the advocate grew, he asked for help with an issue about his romantic relationship. He felt comfortable enough to raise it. He shared that he was angry with his group home, where he lived, because they wouldn’t let his girlfriend stay overnight. She lived interstate and said she wanted to visit. The staff just said no. He asked assistance from the advocate so a visit could take place.

What happened? The advocate’s approach was a considered one that prioritised considerations around choice and control. She knew that he was a man who had experienced a great many barriers. I’ll step you through very briefly what happened.

She engaged with the service, who just ruled out any kind of visit. The service expressed the view that the girlfriend didn’t exist and felt they were protecting the man. They felt it was an internet scam. The advocate thought it was important to allow for the possibility that the man’s girlfriend was real.

She found out more about the girlfriend and learned that she had communicated via video and Facebook, but they hadn’t met in person. She referred to the man as handsome and was suggesting marriage, and that they could get a house in the community. The woman said she wanted to visit. She would buy the plane ticket, but she needed help to get to his place. Could he send the funds for a taxi? With the man’s permission, the advocate looked at the Facebook page and saw that it had the hallmarks of a fake account. It felt contrived. The man insisted that the woman was real because he had had a video connection with her, and he’d ruled out the possibility of AI.

The advocate decided that to overrule his judgement would, in fact, be substitute decision-making and remove the opportunity to experience the dignity of risk and the chance of incremental learning that most of us get all the time. The approach that appeared to get the balance right was to act on the assumption that the woman was real, but to assist the man, to think through steps, to safeguard him through that process.

And that’s what happened. Instead of paying for a taxi, it was organised that a support worker would go to meet the woman at the airport. They found out the time of the alleged flight. The woman went and videoed to show that she was there. They had researched a hotel where they could stay if an overnight stay was desired. All those plans were put in place with the assumption that the woman was real.

The woman didn’t come, but no barrier had been put in the way. Ralph was being treated as an adult and as an adult sexual being.

The woman later communicated that she’d needed to be admitted to hospital and that had prevented the trip. So, the relationship ended, in the man’s thinking, with him feeling disappointed, but also listened to, supported, and respected by his network. He’s bounced back, and he’s still looking for love. He’s just a bit annoyed.

As a happy footnote, the man’s moved out into a new home where he can get around, go to the pub. He has a cat, and he’s optimistic about the future with a strong network supporting him.

So, I’ll move very quickly to my final thoughts. There may not always be proactive family members. Adults may not want to share all aspects of the life with the family. Time is needed for trust to grow. If the person with disability is treated with respect, they may be inclined to share matter of greater significance.

Allowing time to develop a broad range of connections and supporters, both paid and unpaid, including people who can be holders of the story, can be valuable. Writing down or making obvious who those connections are for people who may need them can be an important step. At Side By Side Advocacy, we often gift a photo with our business card on the back, so anybody who might need to contact somebody knows who we are.

Providing guidance for others who may be in a position to support decisions can also be helpful. So, if the advocate had known about the fellow who spoke quickly and knew about his preferred communication style and knew about his uncle who died, that would have been a much faster process.

Lines of communication may be kept more open if people with disability are helped to think through and safeguard decisions, even where you disagree with them. And as noted previously, reframing propositions, explicit guidance, and proof of action are always also important.

So, I’ll skip these last bits, other than to say there are many, many resources about supported decision-making. If you can’t get these down or you don’t want to bother, we will be putting them up on our website soon, Side by Side Advocacy. We’ll be putting those up.

If you want to subscribe to our newsletter, it comes out quarterly, and we often include information and resources as part of that. We’re a not-for-profit organisation. We’re not going to try to sell you anything. So, don’t be alarmed, and you can always unsubscribe.

But we also will be doing some training soon. I’m delighted to say we were one of the few recipients of an ILC grant, and we’re going to be developing training and resources around helping profoundly isolated people with intellectual disability develop networks. So, all of those events, we’re going to open up for anybody who might find them helpful, via Zoom, probably, but some of you might find some of that resourcing interesting.

So, apologies for flying through the last elements of those stories, and it’s been a delight sharing them. I hope you found some snippets of information that may be of use.