Well we got some great responses and comments and asked one commentator if she would like to write a Guest Blog to keep the conversation going. Thank you Ellen Fraser-Barbour*! We think you have raised some excellent points to consider around the recruitment of support workers.

We have reached out, and are hoping that our next piece is a response from some organisations discussed in our original piece. That way we can get a really good conversation going.

Over to you, Ellen.

Photo of Ellen Fraser-Barbour

The NDIS market has seen a rise in the range of services offered, from large traditional provider models to smaller in-community neighbourhood team and online connector models. In my experience the NDIS is opening doors to new exciting opportunities and this should be encouraged.  In my experience online models offer simplicity, flexibility, ease of booking, convenience and affordability. In-community support workers working within an agency or team, can offer a degree of support and “back-up” when planning and managing all the ins and outs of what this important work entails.

I have been wondering, however, about how these new types of self management models safeguard. Yes they, alongside all service providers, have policies in place to ensure safety, security and support for individuals, families and workers and these policies are vitally important but I can think of many examples where traditional large agencies are up to the hilt in policy but do necessarily invest in developing an active organisational culture or practice that truly embraces a human rights approach at base level. Policies are there, but putting this into practice seems to be easier said, than done. This has been highlighted in recent inquiries into abuse in disability services.

If questions of accountability and complaints processes were difficult to ask within large traditional service systems prior to the NDIS, it is now an urgent consideration with the NDIS. Bureaucracy is still there and it is still exhausting and ‘messy’ and complex for people with disabilities and their families to navigate. The only difference is that ideally, people with a disability now decide who is worth the stress and who isn’t.

In my experience, the issues of safeguarding are not black and white, like they might seem in policies. I can think of many examples of risky scenarios and ethical dilemmas people find themselves in every day. Life is complicated and there may be times when individuals or families are under immense stress. These stresses vary over time and place. Some situations of crisis are very apparent but others seem more hidden and are not identified until things have already escalated and workers might need to be able to respond in a moment to these situations. Adversity and crisis can take over and informal support networks may disintegrate. In these circumstances, support workers and professionals may be the primary point of contact for support and a vital link. In reality, however, workers may only be employed for short times, may not be not highly skilled and are working for a basic wage with a high turn over rate. There may be times when there’s a crisis beyond the scope of what that worker can deal with. I think there are times when the worker may well decide it’s “too hard” and leave, or alternatively, individuals may question the actions of workers and may well decide to sack. One hears about families who have been through a whole range of workers lasting a very short time. I think this usually suggests that the support networks fail both workers and individuals.

I think this is where Support-Coordinators or case-managers can be useful. If they’re good at their job, they would be “checking in” to see how things are going with individuals and with their support ‘team’. There may also be times when conflicts happen (because we’re human) and NDIS goals slip to the bottom of our priority list. Issues need to be addressed rapidly, calmly and sensitively and this is aided when there is an identified person available and accessible within that person’s network. Support Coordinators can debrief with families and assist with transitioning to new supports or linking to other disability or mainstream services.

At base level, questions need to be asked about safeguards when self-managing support workers. I admit to feeling out of my depth in even trying to pinpoint some specific questions and I worry I’m opening a can of worms, but I will put myself out on a limb here in the hope that some conversation is generated.

Here are a handful of questions I think organisations or self-managing employers could consider.

How do we show commitment to building trust between people with a disability, families, workers and organisations?

Without trust, it is very difficult for anyone to feel safe disclosing concerns. We are human and what is conflicting for one person, may not be for others. I think this is particularly relevant if connecting workers & individuals online without face to face meetings or a “middle man”. Expectations of stakeholders aren’t always made clear.

What avenues are there for disclosing issues safely and confidentially if things go wrong between individuals and their workers?

If support workers are not part of an organisation who do individuals and/or workers negotiate and receive support from, in times of conflict and stress? Being the direct employer is appealing when things are going well. With participants “driving the bus” so to speak, it means issues should be discussed with them first (as it should be). But what happens when there is a crisis and the person with the disability and/or their workers need more support and resources?

In my experience and from what I have heard of others, even in large organisations with strict hierarchical structures, support for individuals and workers is often lacking in times of crisis. With more workers without any back up or organisation, how are stakeholders protected when approaching sensitive concerns and possible conflicts?

Who is responsible for offering professional development to individuals, their families or their workers as we navigate this new NDIS world?

How is training is offered and how frequent is this training? In particular how do self-managed employers and independent employees access professional development to keep abreast development in the field and up to date best practice? How do we standardise training across sectors in light of the NDIS?  In circumstances where agencies are involved, how much time do service providers really have and how often do they touch base with both individuals and workers and offer professional development, training, debriefing or support?

Of course, these are just a handful of questions one could ask – the issues are complex and I don’t think there are silver bullet solutions or quick answers in terms of how we navigate safeguards and dignity of risk. I am, however, an optimist and a believer in generating conversations about where the gaps are.  These conversations need to represent diversity in order to be truly productive. I hope that there are opportunities for the voices of many to be heard.

I also hope that in writing this piece, I might encourage people to share personal experiences and ideas about how we engage, build bridges and offer the best quality supports and continue to work towards progress.

*Disclaimer:   The author wishes to make it clear that this writing does NOT represent the views of organisations she works for – past or present and is merely her own perspective.

NOTE; The majority of concerns are not necessarily about abuse, or violence and are not severe in nature- but there are times when they are and in these circumstances professionals at all levels of services are mandated to formally report any incidences or suspicions of abuse, violence or neglect to their respective statutory bodies such as the Child Abuse Report line (in SA).

Ellen Fraser-Barbour

A lit match ignites a row of other matches

This is a follow-up piece to my blog titled Shadowlands: Institutions Big and Small and is a re-print of a newsletter article I wrote for Community Resource Unit. Great newsletter – grab a copy here.

Institutions come in all sizes, but they all begin with separation. Such separation shapes the identity of the people who live in them – not just how they are seen by others but also how they see themselves and their place in the world. My brother Matthew grew up in institutions. Living away from us firstly in a hostel and then in a number of group homes. That was a long time ago and much has changed since then. We have come a long way down a path that has helped us to create a real place of belonging for Matthew – in his own home and a community of his choosing. In this article I am exploring what it took from within us, for this change to occur. It started with a ‘leap of faith’.

I had an insightful experience recently around leaps. I needed to make a decision around something that felt emotionally hard and I was encouraged to try something different to my usual ‘think it out’ approach. Somebody close to me suggested I try a process to gain a different perspective to get me out of my head. This person has much experience helping others who have the same affliction.

The process was to externalise the decision, to help me move from my head to using my body and objects. I was asked to choose objects to represent the decisions or the problems as I saw them and then I had to place them wherever they made sense to me. Very interestingly, the decision I perceived most difficult was the one I placed closest to me. The person invited me to take a step into that place in order to feel what it was like to be there. I had perceived this step as an enormous leap, too hard to take safely really, but there it was, in front of me, only a footstep away.

I was then told to literally step in to this new space and yet I hesitated… a lot. I saw it right there in front of me. Strangely it was very scary to take the step but once I did, I knew as soon as I was there that it was the pathway I wanted. When I was ready this unfathomable leap became just a step.

What I think happened was that I stepped out of my thoughts and their supposed logic and into my gut and heart space. I felt the change I needed to make and this made all the difference. When I felt it, I couldn’t talk it away – there was no going back. All the difficulties still seemed to be there, in the path of this decision, but my perspective on them changed. They began to feel less like difficulties and more just things that may (or may not) happen and just a natural part of the process.

Building the stack

This was what it was like for my family in the build up to when we helped Matthew move into his own home. Some of my earliest memories from this time involved a lot of communication within my family about what was wrong with Matthew’s life. A lot of complaining, if you like. But we did it with each other as we shared the inkling that surely life has got to be better than this. During this time we were building our understanding of what it was we were not happy with. This was in the days before self-direction or personalised support and notions like ‘consumer governed’ or ‘family governed’ had not yet crossed our paths.

I also remember being present with other families at conferences and education forums as we grappled with the question of ‘what could be’. The conversations started with all the things that are wrong and moved over time to better ways of doing things to not only replace them, but to make them obsolete. Piece by piece we were building a vision of a better way.

For my family the vision we were building included Matthew having his own home and a crucial element of this was wanting Matthew to not have to face strangers any more. The pain of dropping him off at the group home to a stranger who didn’t know him or how to communicate with him or even take care of him was excruciating. The heart ache of that was too much. Imagining him at one moment being understood, nestled and loved, and the next moment being completely on his own amongst others, fending for himself, was awful.

Inside us at that stage were murmurings that things weren’t right, but we needed an external trigger that helped us see the possibilities. All we needed was a spark to ignite us and turn these imaginings into possibilities. We needed to be exposed to the possibility that somebody with a severe intellectual disability and autism who doesn’t speak could have their own home and that other people without disabilities would want to live with this person.

What happens for so many people and families is that they live in systems where others are traditionally given the role of problem-solver. This encourages families to dwell in problems and as they are encouraged to give over their power to others in the belief that those others are the ones who will create the solutions. It can also encourage them to dwell in waiting – waiting for the funding package, waiting for the next service. When people are waiting they are largely passive. It is the path of victimhood. We found this to be a bitter, soulless place to be.

Spark

When something else comes in there – I see it as ‘possibility’ – then there is the spark that can lead to a shift. I define possibility as something I have not yet imagined for myself and this is always most powerfully communicated through a peer – that is, seeing that it is possible for someone like me. ‘Possibility’ was the kind of external trigger we needed and once we had that our imaginations ran wild. We dared to imagine him being involved in his community because we saw that others were doing it. We dared to imagine him living with someone who didn’t have a disability because others had shown us it was possible.

‘Possibility’ has got little to do with centres or service providers or case managers or assessments. Ironically, ‘possibility’ dwells in ordinary things that make life great for all of us and makes us want to get up in the morning. These things are the possibilities for all people, even people who most challenge us.

Ignition

Once we were ignited by possibility, we needed to take ownership of that possibility; see it as not just an idea somebody else had made happen for themselves, but something that could fully take its own shape in Matthew’s life. We were the ones who needed to make this change. It was not the responsibility of anyone else – government, service providers, case-managers, Local Area Co-ordinators etc.

That is not to downplay the importance of collaborating with others. We had many genuine and valuable allies that helped us make our vision for Matthew possible. In fact having professionals on board helped us facilitate new breakthroughs. They were most useful when they were true allies. Allies because they had taken ownership of the part they could play in change. Their work was genuinely transformational and that’s what made them good.

I also remember inviting our long term family friend, Jane, to help us. She became Matthew’s first circle member when we all began talking together. I remember my mother’s tenacity and strength.

Fanning the fire

Once people are ignited then a fire is built. That’s when we see this idea of a fire burning in people’s lives so this is then about creating and tending to what you imagine. Moving from possibility to imagination to then creating that thing that you want. These are really the conditions for personal autonomy, for being in charge.

I remember when we had been overcome with the possibility of Matthew moving into his own home. I would wander the suburb where we imagined his home would be (a suburb close to my university where many of my friends and other young people lived). I would stand in front of lovely homes (not grand homes ) that I thought he would like to live in and picture him there.

It is important to continue to add fuel to your own fire by keeping in touch with peers and possibilities. The point is not to light the fire once, but to keep it burning and the more people attend to a fire the longer it is going to burn. We are thinking about this idea of sustainability, of keeping something going, of keeping something alive. For this you must do another potentially challenging thing. You must be with others, especially those that can lovingly challenge you, and you must nurture those relationships. If you do this work on your own you will have a harder job keeping that fire burning.

I know that Matthew’s life, with supportive networks (both paid and unpaid) around him, is something that helps other brothers and sisters to get involved and plan for the future. To feel more able to think about developing, building and sustaining these supports after their parents have died. If there aren’t these networks and all you can see is you, it starts to feel again like an enormous thing you will have some-day to ‘take on’ – but this is for another article!

Conclusion

The lessons I have shared from our experiences with Matthew are relevant both on a personal level but also one much broader. The process I have outlined above is relevant to people looking to create change in systems as well as in the lives of individuals with disability.

The families of today are taking these leaps and being ignited by the ‘possibilities’ shown by other families. They are grabbing the possibilities – stepping in to them, feeding them and making them their own. They are building networks to fan the fire.

My hope for the future is that we can assist each other, from the space of radical change, to grow new organisations, projects and enterprises. Working with people as they do this work for themselves, so that when they take this leap, it might not feel like a jump into the abyss.

This piece of writing came to life in conversation with my friend and mentor, Pam Morris, and a social enterprise mentor, Tracey Allen. Pam’s son moved out of Peat Island institution in NSW. She was the only parent who supported its closure at the time. It didn’t close but her son moved. 

A young man talking with four other people

We recently held a workshop called Nurturing your Tribe. We were thrilled to find people with disabilities and their families attended with other people they had made an ask of; like becoming a housemate, or a friend whose strengths could help achieve something. We just loved playing a part in nurturing these vital relationships!

At one stage a young guy, Matt, stood up and spoke to us about being asked to become a housemate. He told us he’d known Chris at school and then after school they had continued to be connected in similar circles. Then he and his girlfriend were approached by another woman they knew, Jennifer, and asked if they were interested in considering moving out with Chris and sharing an apartment together. Both knew Jennifer- Chris was now employing her as his ‘lifestyle facilitator’ partly because she was so well connected.

Matt talked to us about the process of being asked and why he and his girlfriend said yes.

He told us that it was important to hear it from Jennifer because he knew she would be giving solid and trusted information – that it would be as she was saying.

He also gave insight into 3 essentials for a really powerful ask.

1. What’s in it for the person being asked

When you are making an ask consider what could be of benefit to the person being asked. Matt said it hit them at just the right time.Trying to move out into your first place in Sydney can be really hard. They were talking about moving out together but financially it was difficult. Chris’ offer involved financial assistance to make it work (in exchange for some roles and responsibilities with him). It was going to be a win for them.

2. What’s in it for the person

Matt told us that he had always been so impressed with Chris and could see what he had achieved so far in his life. He and his girlfriend were delighted to be asked to be part of helping Chris get further, of helping him take the next major step in his life. He said “we love being part of Chris’ story”. This is a big win for Chris.

3. What’s in it for a broader group or the community

Matt told us that he knew Chris had a wider support network, and could see how their contribution would help to strengthen this network and see the fruits of their efforts come to life. They wanted to be part of that network too and the bigger vision. This is a win for Chris’ parents, his brothers and his community.

So give it a go. Think of your ask in 3 parts. Imagine into all of them – don’t just think ‘what is in it for the person’ but also ‘what COULD be’. Check you have considered all of them. Let us know how you go.

Today is International Day of People with Disability.

I tossed around whether to write something for it.

I felt uncomfortable because part of me agrees with the critics – is it a celebration of false community; a smiley-face-party-hat-of-froth overlaying deep inequality? This especially stands out for me when I see the functions created by service providers for their ‘clients’ and know the deep lack of power and decision-making that is likely to characterise their relationship with that provider. Part of me squirms wondering if some of these people might be subject to the kind of violence, bullying and abuse that so easily flows in situations where people are vulnerable and power is concentrated. Take the recent case of the worker at Yooralla service in Victoria.

But today has been the catalyst to some reflections and I decided to share them.

IDPwD has made me reflect on all the people with disabilities I know, love, care about, had the opportunity to work with and am associates of. And I do want to celebrate them. Not as inspiration porn or as some ‘object’ of my learning. Not as some false community. We have congregated and segregated people with disability for centuries and a day like today can indeed serve as a way of yet again, bringing people together (literally or figuratively) in a bubble of non-togetherness. I always remember thinking as a kid that the other people my brother lived with in his group home were more different from each other than the same. Matthew always gravitated to certain people and they generally weren’t those he was deemed by others to have something in common with.

No, when I think of these people I see them in my mind’s-eye making their way in life – with all its concomitant joys and ‘I hate-the-world’ periods. Making their way in life through their own local, political, work-related, family, interest-related, religious and (insert your own title here) communities and sub-cultures.

And when I do that, it gets me excited.

Don’t get me wrong. I see everyone I know struggle, feel so frustrated and experience multiple personal rejection. It regularly flattens me. But I have also had the great privilege through these treasured relationships to see what happens in worlds when people with disability are genuinely present. Those worlds change. So through my relationships I have been able to see a world changed. And that is what I want to celebrate. Thank you one and all.

Institutions come big and small.  They can be a house with 4 people with disabilities staffed 24 hours a day with ‘carers’. They can be one kid with disability stuck up the back of a classroom learning a separate curriculum glued to an adult ‘support teacher’.  They can be our own family desire for creating security, long after we die, by building things to put people in. They can be the leap from “John needs friends” to “Let’s create an Asperger’s social group” rather than “Let’s figure out the kinds of people John might like to meet in his community based on all of John’s inner-ness”.

I know the smell of institutions. I smelled it first when I was 7 years old. I don’t want anyone else to know that smell. All the so-called solutions above smell like that to me. A mixture of urine, wipe-down-plastic-furniture and industrial cleaner. They smell of distance and rejection and exclusion. We’re plagued by the notion that building things and creating more services is the solution to the life needs of people.

So I find I have more in common with anyone keen on building a truly-inclusive world. For starters they are a far sexier bunch.

I saw this meme on Facebook recently. It reads “We blame society but we are society.”

Interesting. We can’t expect the world to be more welcoming and inclusive if we are not doing the same. We can’t say society doesn’t accept people as they are while we continue to build segregation. Sometimes I am categorised as part of the community of carers, family members, siblings. But I don’t necessarily consider myself totally part of those communities. I know why many parents seem intent on re-building institutions. I FEEL why they do it. But by doing it we re-create the very world we long would change.

Now I don’t want to go all soppy on you, and I know I said something about inspiration porn, but building a truly-inclusive world, that is a real hard place to be. That is where heartache lies because of course there are many a*^holes in the world and because you still can’t even get in the door most of the time. And because pretty much all the resources are still locked-up in congregated and segregated solutions. They are really up against it. So to choose something different is a very vulnerable and often tiresome place to be. And therefore I think it takes extraordinary courage.  Because if it’s the riskier place to be, with possibly much personal cost, then those people I know, love and care about, have to decided to be in that place anyway.

And I want to thank every one of you on this day.

Connection with others is part of why we’re here. To love, to be loved in return and to belong.

But the risk here is heartbreak, let-down and rejection.  So strong, caring relationships and belonging keep people safe but they are also a key experience of vulnerability. Many people decide that this is too big a risk to take on behalf of themselves or their family member. How might we find a way forward here?

In my experiences around my brother and with other families and individuals in building relationships within community, I find a common struggle. It is not with the intellectual understanding as to why relationships are important. It is with emotional step to start, to try, to reach out to others, to ask.

So I’m going to talk about the things that get in the way that I think are within us. It is comfortable to think that devaluation is something that the ‘system’ and others create. It means that others are the ones that need to change.

In recent years a personal shift I have taken is to value and focus on my inner self more. If something out there needs to change, what am I doing in myself about it? In my 20s I thought this was a luxurious navel gazing experience for middle class wankers. The world was going to buggery and there simply wasn’t time for this. Action was what was needed. Now I see that, whatever our position – whether we are thinking about ourselves and our own relationships, or whether we are thinking on behalf of another – we can all reflect on our place and our power in our own or another’s life.

What are safeguards?

We might typically think of them as measures which offer protection against vulnerability arising from devaluation.

A small example: several years ago in checking Matthew’s budget book we discovered a discrepancy between the amount Matthew withdrew at the bank and the amount that would be entered into his ledger. For example, his bank statement would say he took out $160. His ledger would note $120. Small amounts – usually 20, 30 dollars would be missing. And always the same signature of the staff member when this happened. Theft by a known and trusted person in Matthew’s team.

We realised we had little knowledge of Math’s weekly monetary matters. The safeguard we created was that from now on a family member would check Math’s budget each week, create a new budget, write it in his ledger and draw up the withdrawal slip with the amount on it. We’ve never had a problem since. But have we had other potentially negative impacts?

Wounding experiences

This leads into thinking about wounding experiences. Matthew has faced many wounding experiences from people whom he and we trusted, or that the service system supported and trusted. Some of them are still too painful to mention. What happens when trust is broken? What happens when you feel people have let you down? Matthew’s disability is such that he just does not comprehend these experiences intellectually and this makes it all the more painful because his experience is being in close relationship with someone one day and then never seeing them again. He can’t speak so how does his voice get articulated in these experiences? Often it simply doesn’t.

The question I have been asking recently (and no clear answers yet): as a family governed system of support, have we created safeguards from these experiences that come from a wounded place, a place that often finds it hard to trust, a place where we are trying to make up for all that lost time when Math was away from us, a place of feeling let down and hurt by others?

If this is the case, and in a ‘representative system’ (that is where family and others largely represent Matthew’s interests), are we inadvertently adding to vulnerability when we take action from these places? It is only human to find it hard to bounce back from the breaking of trust, from experiences of rejection: to move on and treat the next experience as totally new, without the ‘baggage’ of the past. No-one can be blamed or judgement made about any of these very human reactions and experiences. But in a representative system, because you are acting on another’s behalf, it is always healthy to ask questions and to reflect. A case in point with the example that I have used above. With only family now with authority around Math’s weekly finances, what impact dos this have for others in his system? I have found that we have locked ourselves into a solution that doesn’t give us much freedom. Who do we ask if family members don’t want this role anymore or want to go away or are somehow unavailable. Do we trust anyone else?

My hypothesis

I still firmly believe that relationships, connection to others and inclusion are the strongest safeguards against wounding and devaluation. What ultimately keeps people safe is other people and there are lots of powerful and life-giving examples of this in Matthew’s life. For starters the difference in his life since he came back to us and reclaimed his place in our family. Connection is why we’re here. I believe it is part of our human identity – to love, to be loved in return, to belong. Our identities are relational. I am me because of my relationships to others.

So here we have the block – believing in the power of relationships but having experienced multiple wounds from relationships.

Fully embracing vulnerability

The bind is that relationships, inclusion, belonging keep us safe, but they are also a key experience of vulnerability. In order for connection to happen we have to allow ourselves to be vulnerable.

What if we tried to see vulnerability a bit differently; as a human experience?

I would encourage you to take a look at the work of Brene Brown.

Listening to her research into these areas of connection, vulnerability, shame and authenticity changed my whole perspective and was catalyst to me delving into these questions. Check out the fantastic presentation she did for TED Talks a couple years ago.

The risks when we reach out are being misunderstood, being rejected, feeling out of control, feeling exposed, fearing being seen as needy, all our crappy characteristics will become known and then we we’ll be left, being in a place where there are no guarantees …… this list goes on.

As a family member, I think we often take on these fears on behalf of our person with disability. They have faced so many wounding experiences already that we don’t want them to have to face anymore if we can help it. Actually we become afraid to take a risk on another’s behalf.  All the previous wounding experiences pile up and this history makes it hard to take any more risks. Do we then become part of the wounding structures ourselves because we can’t bring ourselves to do this, because we perceive too much risk in reaching out? Because this kind of vulnerability is also the birthplace of joy, creativity, love and tenderness.

Brown’s research reveals consistently that the one thing that keeps us out of connection with others is fear of not being worthy of it. People who felt they were worthy, fully embraced vulnerability. To them it wasn’t pretty but it was necessary. If I haven’t tempted you to her website, I hope I have now!

This then got me thinking about shame. Do we carry shame about ourselves or shame on another’s behalf? Do we believe that we or the people we represent, are imperfect but worthy of love and belonging? If we don’t believe that people can connect to others in their vulnerable and imperfect state, or that there are some people worthier of love and belonging than others, then we won’t be able to take the steps of reaching out to others, of developing relationships beyond those paid to be there.

Brown’s research over many years has revealed that the only difference between people who have a strong sense of belonging and worthiness and people who wonder if they are good enough is that they believe they are worthy of love and belonging.

We need the courage to be imperfect, compassion to be kind to ourselves and celebrate who we are.