Open Letter To Disability Service Providers

27 September, 2023

Dear disability service provider. As Chief Innovation Officer at Life Without Barriers, an organisation I feel incredibly proud to work for, I understand first-hand the impact of the work disability service providers do on people with disability and appreciate the opportunities, challenges and pressures our sector is facing. It’s for this reason that I think you need to hear about how people with disability experience service provision in this country and what you can do to change that. First though, some context.

While all of us are awaiting the impending reports from the Disability Royal Commission and the NDIS Review, please remember that for those of us who are disabled, it's deeply personal. This is because we fought relentlessly for our Royal Commission which would give a voice to those who had been silenced for too long and for a National Disability Insurance Scheme which would afford people with disability voice, choice, control and dignity. Many service providers, (including Life Without Barriers), have supported the spirit of and willingly contributed to the work of the Royal Commission and we are hopeful its recommendations will be a catalyst for profound societal change that will positively impact the lives of people with disability. Nevertheless, there's no doubt that for many people with disability, (particularly those of us who experienced historical abuse, neglect and exploitation), the reality of sharing our stories with our Royal Commission, which we knew would be difficult but which we hoped would result in the opportunity to feel heard for the first time, has served only to retraumatise and further isolate many of us.

Moreover, while the NDIS has changed lives, (mine included) for the better, the Scheme has failed many people with disability. It has frequently been weaponised against us, leaving us feeling as though our access requirements are a burden on society.

Before you reach for a strong drink and fall into a deep depression though, let me reassure you that it's not all been doom and gloom for people with disability. Despite the deep and profoundly personal challenges people with disability have endured in recent years, the experiences of coming to terms with our traumas by sharing our stories and of coming together to prevent the introduction of independent assessments into the NDIS planning process have strengthened our collective determination not to settle for mediocrity when it comes to the services and supports we need and have given us plenty of opportunity to clarify our expectations of the organisations that exist to serve us.

Whether you're the CEO of a service provider who has struggled to transition your organisation to the NDIS or a support worker who works long hours for pitiful wages to help us live independent lives, you're probably starting to feel a bit uncomfortable about now, wondering what this angry advocate expects you to do. Believe me, I understand, I really do and don't worry, I'm used to being labelled as angry and I'm proud to be an advocate, so I can handle it.

I'd ask you to sit with your discomfort for a minute though, because what you're experiencing now, that sense of righteous indignation you're probably feeling because you’re doing the best you can, that's exactly what we experience all the time.

Every time you develop a new policy, and we're not in the room to share our perspectives on it with you because you're the "experts" on our lives, and too often, even when we are consulted, we don’t get paid for our time and expertise; or whenever your organisation appoints a new CEO or executive leader who is a nondisabled person, yet we don't even get an interview; or when you claim to care about us, yet your photos and videos on social media are not audio described or available in Auslan; or when you talk about us in the media but we are not featured as equal contributors to the story and if we're present at all, we're an object of pity or a super hero. I could go on, but you get the picture I hope. Oh, and by the way, that feeling your experiencing right now, it's disempowerment.

Yes, it's all about what Disability Royal Commission researcher Shane Clifton refers to as "hierarchies of power". We know they are well-meaning and are designed to "protect" us. Still, they have the unintended consequence of keeping us silent and invisible at best and according to Shane, of setting the stage for us to experience higher rates of violence and abuse in your organisation at worst. So now that you know how dangerous disempowerment is, what can you do to dismantle hierarchies of power?

Shift The Balance of Power

Those of you who testified at our Royal Commission will not be surprised to hear me say that the most important step you can take immediately is to appoint people with disability to your boards and senior leadership teams. After all, you were rightly grilled by the Commissioners on your track records in this area, which are frankly appalling across the board. My employer, Life Without Barriers is leading the way in this regard, having had strong and consistent disability representation on its board for a number of years now. Still, we know we must do better when it comes to employing people with disability as senior leaders.

That's because, as Christina Ryan from the Disability Leadership Institute points out, one disabled leader is never enough; not only because it's tokenistic, but because it puts a disproportionate amount of responsibility on that individual to take on the emotional labour of representation, education and innovation on behalf of a diverse and intersectional community. This is not my first rodeo when it comes to prosecuting the case for disability leadership, so I can hear you now, telling me that you've tried, but there just aren't enough disabled leaders out there, or that you'd welcome us, but we're just not a "safe pair of hands" and so on. But I'm calling bullshit on all the excuses now. That might sound harsh to you, but to be blunt, you've run out of time, and while we people with disability have been working hard to up skill because apparently, we're the problem here, what have your organisations done to up skill your employees to work with us and to make your organisations accessible? I'll just leave that there and move on now, but I hope you'll put the litany of excuses to one side for just a moment and consider the possibility that the problem is your lack of readiness and your bias towards people with disability being your clients, not your CEOs and that you need to do the work. I also hope that those of you who hold leadership positions will give serious consideration to making way for us, the experts on disability, to lead the organisations that support us.

Nothing About Us Without Us

Many of you have client advisory committees and other mechanisms for consulting us. While they are a great start, it's time to step up your game and to co-design and co-produce with us. Co-design and co-production extend well beyond consultation towards power sharing. At Life Without Barriers, we are working hard to empower the people we support to be at the centre of the design and development of policy and service delivery. We have a long way to go, but we are actively beginning the process and have every intention of embedding genuine co-design and co-production into all we do.

You might not like to admit it, but I've been around long enough to know that this notion of people

with disability having more power to be the architects of service design and delivery scares many of you, not because you don't want to work with us, but because you're frightened of opening the door to our expectations. The good news is, we're actually a lot less angry and irritated when we feel as though we're being genuinely invited into the conversation. So doing this will probably reduce the number of complaints you deal with. The bad news is, that as with the issue of disability leadership, your time has run out to ponder this. It is no longer an optional decision that rests with you. It is a basic human right and we will only become more vocal in our demand for it if you fail to take action. So my advice is to be on the right side of history and start now.

Empower Us To Be Loud And Proud

Part of my role at Life Without Barriers is to speak to the media, particularly about our social policy work. We recently released a policy which will see us separate our supported disability accommodation services from our supported independent living services to increase choice and control for the people we support. I have taken the stance that I will only speak to the media about this policy in partnership with a person with intellectual disability who has experience of living in supported disability accommodation. I've done so because while I am a person with disability myself, I do not have the lived experience of intellectual disability or supported accommodation. I'm also very conscious that people with intellectual disability are too often invisible in our communities and I do not want to perpetuate that. More than any other industry in our society, the disability services sector has the capacity to amplify disabled voices in the media, yet our service providers are generally terrible at it. Sadly, when we are profiled by service providers, it's too often in puff pieces about us playing sport or doing art therapy that tug at the heart strings of potential donors whilst infantilising people with disability in the minds of the public. That is no longer acceptable. Every time you're organisation is in the media, ensure a person with disability is central to the story. Ask the people you support if they are interested in speaking to the media and train them to do so. Trust that they will represent your organisation well and step up and deal with the fall out when they don't, the same way organisations outside this sector have to deal with rogue consumers who attempt to discredit them. That's your job.

If you've read this far, thank you. This sector is brimming with passionate, enthusiastic people who want to do the right thing by the people they support. Hard as it must have been to read this letter, I hope it has been a call to action, not a source of shame. This transformation we're going through now which is redressing the power imbalance that has characterised the charitable model of service provision is challenging for all of us. But be in no doubt, it is no longer optional and as with our Royal Commission and the NDIS it is a profoundly personal, once-in-a-generation opportunity which people with disability will not miss the chance to take. Why? Because when you go home tonight, you can stop thinking about disability until you come back to work tomorrow morning. Not so for people with disability. Whether we like it or not, it's a non-stop commitment for us. So we hope you'll join with us as active allies who will empower us to create a bright future for disability service provision in Australia.

Emma Bennison, Chief Innovation Officer, Life Without Barriers