The Magic of Online Disability Support

Not a lot of people are aware that online disability support is an option. It’s not useful for all folks in all contexts, but for some people it’s absolutely magic. Myself and some of my team have been offering this for the past 3 years and we’ve seen some fantastic results for adults and older teens.

I find that there’s often a very limited view of what Disability Support Workers do with their time, and it can be restricted to basic domestic domestic tasks like cooking, cleaning, and driving folks around. This is certainly a lot of the work we do, but our role is generous in scope, and a lot of important, valuable work can be done remotely. My team started offering this during covid, some of very vulnerable people were assessed as low support needs by other organisations and had their services removed. There’s a profound misunderstanding at times of the nature of mental illness and neurodivergence. Just because these people could technically make themselves a meal and feed themselves didn’t mean they had the capacity to organise, prepare, and eat during a massive worldwide crisis. We picked up a number of clients who were physically capable but at serious risk, self harming, having meltdowns, unable to keep themselves safe. Online support provided safety and connection and addressed essential needs for folks who were otherwise unable to meet them.

Beyond covid, virtual support can still solve a lot of common difficulties for people:

  • Living remotely with limited local options
  • Difficulties with trust due to trauma, paranoia, or anxiety making it harder or impossible to have people in your home
  • Difficulties with your family or housemates making it impossible to have support workers in your home
  • Low social battery meaning in person supports can be exhausting
  • Sensory sensitivities, eg heightened sense of smell making it difficult to have people in your space
  • Over empathic difficulties where you mirror people’s physical and emotional experiences in their presence – for some people, working remotely reduces this
  • Chronic instability of plans or housing where you never know where you’re going to be at 3pm on a Thursday but a phone call will probably find you
  • Having specific support needs such as an uncommon disability or trauma history that make it harder to find and onboard local folks who don’t know much about it

The most common types of support we have found helpful for people virtually are

  • Administrative tasks
  • Planning, goal setting, prioritising, delegating
  • Organising and tracking projects
  • Body doubling
  • Prompting good working habits eg self care, breaks, realistic expectations
  • Problem solving
  • Communication: scripting, responding, booking, cancelling, rescheduling
  • Researching eg job ads, friendly dentists, ideas for managing spasticity, support groups
  • Onboarding and training other staff eg pre interviewing cleaners, training new support workers in predicting and managing meltdowns well, helping onboard a new OT, staying screening questions for a behavioral support practitioner
  • Managing the roster, handling short notice cancellations, organising staff
  • Emotional support and mentoring
  • Homework and study support
  • Reminders and support to utilise other allied health services eg to practice the mindfulness suggested by the psychologist or purchase the fidgets recommended by the OT
  • Note taking and facilitating other appointments eg helping someone feel safe to attend a telehealth appt with a new dietician

I’ve seen a lot of folks able to use online supports to overcome some considerable access barriers. In some cases we start online then progress to in person support as relationship and trust is built, and the right team with the best onboarding and training process comes together. In other cases online support continues to be a really essential part of someone’s support long term.

I use online support myself to help manage my business, because my disabilities can severely impact my capacity to track tasks, respond to emails, and manage my calendar. It’s convenient for me to have someone online rather than in my space, they are linked to my online tools like email, and I often use their support in my online meetings. I find it helpful to be able to message questions or needs as they occur, and then pick them when we next meet.

For our clients I’ve seen people use online support to go from having no in home services at all due to a severe trauma history, to being able to manage a whole team of supports!  Folks living very remotely able to gain the right support for them and finish up some tricky administrative tasks. People living in profound clutter able to start building a supportive relationship without having to confront their home environment immediately. Folks with severe fatigue able to get on top of essential tasks without having to ‘host’ a person in their space. People with compromised immunity able to have regular assistance during periods of severe vulnerability such as the week of chemo treatments.

You can text, phone, video call, or online chat. You can allow them into your digital calendar, or use free task tracking tools such as Trello. You can forward them a confusing power bill or stressful Centrelink letter. You can screen share your assignment or set your phone up on the kitchen bench and talk it through while you wash some dishes.

If this sounds like a great idea for you, you have a bunch of options in how to set it up. If you have an existing fabulous support worker you can ask for one of their regular shifts to be remote and see how it works for you. You can onboard a new support worker specifically for this role. You can also reach out to an online virtual assistant such as the lovely folks at Realtime VA. You’re certainly welcome to contact me, although I do have a waitlist for new clients.

I hope this is useful food for thought and an encouraging different approach. NDIS is a minefield of constantly changing rules and wild confusion but there’s capacity for a lot of creativity still and when support work ‘as usual’ just isn’t working for you, you can try something quite different and see if it clicks. All the best!

Navigating Hurdles to using Disability Support Workers

I’ve previously written about Understanding Hurdles to using Disability Support Workers. Here’s some approaches that can be helpful when you’re dealing with hurdles like those. Not every agency or organisation or support worker will be on board with all of these options, they all run in their way and have their own limitations – however even if they can’t help, they should never shame you for what you need or would find helpful. You have every right to ask, to advocate, and to try different approaches and discard what doesn’t work for you. Remember it’s never just going to be you that finds this hard, or that needs that approach. When we ask, we make it a little more normal and a little easier for everyone else too.

Start with the Least Stressful Task

Pick the easiest task. You might have complex support needs and circumstances and be totally overwhelmed, so maybe this isn’t the week for someone to come and assist you in showering, or taking notes during your psychiatrist appt. Sometimes it’s easier to get started with the simplest task. That might be someone to wash the dishes a couple of times a week. It might be driving you to the physio on Thursdays. It can seem stupid to book this in when there’s so much going on and so many unmet needs but just getting a thing handled for you is an excellent place to start and can get past the block and freeze to having any support at all.

Avoid Relationships

Don’t set up a Support Worker, set up someone who functions as a taxi driver or cleaner. If the relationship with a stranger is part of the stress for you, start with an impersonal service. You can request a Support Worker or cleaner do tasks while you’re not even in the room or house. You can ask to be driven to an appt and home and explain when you book that you’re stressed by conversation and to please not engage with you. Deal with having them around before you have to adjust to having some kind of relationship. Sometimes this can make it manageable.

Just work on the Relationship

Alternatively, forget the tasks for a bit. Just do something you enjoy and get to know this other person. Play a board game. Take a walk. Go for a swim. Watch a movie and discuss. Do downtime not stressful stuff and build a connection.

Delegate

Get someone else to hire and supervise. If you have a trusted friend or family member, they can help get the ball rolling for you.

Do a Graded Increase of Supports

Start small. You might be funded for 30 hours a week but the thought of that is terrifying even though you really need it. Maybe you need to start with 2 hours with a Support Worker. Organisations may try and jump you straight to a full schedule of supports and for some people this is completely the wrong approach. Once that 2 hours is feeling manageable, perhaps in the third or fourth week, you might want to extend it to 4 hours, or keep it at 2 but get them in twice a week. A soft, flexible start like this can be essential to having the support be helpful instead of feeling like a crisis to manage. Not every agency or worker will allow you or be able to do this, but some definitely will.

Get a Lead Support Worker

Start with an experienced Support Worker, and as they learn about you and your needs, get them to onboard and train your team. They can be the key or lead Support Worker and you can use them to help with communication, relationship, training, and rostering. They can function as your executive assistant and the team leader.

Keep them Outside

If having people in your house is terrifying, don’t let them in. I have worked with many people who have needed all supports to be out of the home at first. You can do online support where someone calls or video calls and helps with your admin. You can meet in a public location like a library or park. You can sit on your porch together. You can get in a Support Worker to help you in the garden and do that together every week for as long as it takes to feel safe to let them in your house. You can have a friend or family member with you every shift at first. You do not have to do the ‘typical’ support stuff if that is just beyond you. We are here to actually help and sometimes that means being really flexible, really gentle, and moving at this very slowly.

Just be aware Support Workers are people who do need access to shelter, water, and toilets so you may need to make sure there’s other options if they can’t use your home.

Alternative communication

The entire disability sector is oddly oblivious to the need for a variety of options for communication. Many people are deeply stressed by phone calls and prefer text messages. Or find emails impossible and need mail. Or do best on video calls. If you find discord easy you are absolutely allowed to ask to communicate with your providers and Support Workers there. Some organisations lack the flexibility to engage in different ways, but many smaller ones or independents will absolutely understand this need and it can make so much difference to managing a roster.

Explore your Overwhelm

If this is one of the big issues for you it might help to explore and understand it some more, perhaps with a therapist or friend. Good Support Workers will absolutely be able to help with this, but there’s many things than can drive overwhelm and some of them will actually get worse if we approach our Support Worker through their lens and recruit them into the same factors. Some more thoughts here: Finding Ways out of Burnout and Overwhelm.

Guides and checklists and labels

If you set up the spaces in your home you are using Support Workers so they can easily tell what is needed, you will have less irritating variation, and less need to train them. This is a great option if you have a larger team, a lot of staff turn over, or a horror of training staff. If this makes you feel like you’re living in a hospital or facility then absolutely don’t. However many multiple people households, especially with kids or multiple people with disabilities, find having labels and clear systems can make a massive difference to the smooth running of the home. The kitchen is an excellent place for labels on draws, photographs of what content should look like, labelled food storage, and simple check lists of what resetting the kitchen looks like. In my home I tell staff that if they can’t work out where something goes, leave it on the bench and I’ll go through them at the end of the shift – I vastly prefer this to losing items that have been hopefully stuffed into random cupboards!

Never have just one support worker

This is a tough one. When getting started has been hard and you finally have a good one it’s so tempting to stop there. A basic rule of thumb is that every participant needs more than one Support Worker, and every Support Worker needs more than one participant. The degree of vulnerability if you only have one person is so high and it runs both ways. Support Workers need to know they can take a sick day without your world falling apart. You need to know a Support Worker can leave without the sky falling. Losing a good Support Worker always sucks, I hate it. But when you have at least two on your team you can limp along while you recruit. If you only found one good Support Worker in the world, it can be an impossible ask to look for another one, and to go from someone who has known you for months or years and is now highly attuned to you, back to the start with someone who has no idea about your story, your capacity, your needs, can be more than people can deal with. Don’t stop with one. Good, experienced Support Workers know this and will encourage and help you not to stop with them.

If you’ve struggled to get going with Support Workers and have found something else that has helped you, please do comment or message me and let me know. There’s so many folks out there feeling stuck. I have my own deeply personal experiences of how hard it can be to let people help, how essential it is to feel safe..

I hope this gives you permission to go off the beaten track if you need to. Hurdles are common and there’s many ways around them. Good providers will create an alliance with you to help navigate them, and there’s many, many great Support Workers out there who are keen to help in the ways that will work best for you. These ideas can be put into practice with any providers or independent Support Workers, and you’re certainly welcome to get in touch with me and my team if we seem like a good fit. Best wishes and take heart. You’re not alone, and for most of us it gets easier.

Understanding Hurdles to using Disability Support Workers

I have been a Disability Support Worker since 2019 and began employing other Disability Support Workers to help ensure my clients actually survived when the pandemic kicked off in 2020. I also run the NDIS plans for my family members which means hiring Disability Support Workers to come into our home, so I get a fabulously rounded perspective on this one. I can tell you that good Support Workers change lives. The relief of competent support is profound, especially when things have been bad for years. It’s like the storms don’t go away but you finally have a roof on your house to keep out the weather. Support workers can also drive me batty, they are exhausting, daft, unreliable, and uncomfortable as hell. They can also be an intensely vulnerable, isolated, and dehumanised workforce. There’s a lot of perspectives to consider.

One I want to talk about today is not shared very often. I hate hiring Support Workers for my family. It seems so strange for those of us with NDIS funding – we so need the help, we’re so relieved to finally have a plan, there’s all the weird survivor guilt of having access to a resource when many are denied and in need, and then there’s the gap between what we need and what have to do to get it. This is a small gap for some folks. They call a couple of agencies, get onboarded, and away you go.

For me and many like my family, it’s just hard work, and this work is largely invisible and rarely discussed. I don’t like the uncertainty, I don’t like the getting to know each other part, and I don’t like the energy it takes to deal with people coming into our space and not yet knowing how to do things our way. It’s stressful. I don’t like having to look around and interview people. I hate onboarding a new agency. I hate having bad experiences, being patronized, lied to, bullied, manipulated, harassed, and let down. It takes spoons and bandwidth to find, onboard, and train staff. It takes savvy, patience, and time. It takes optimism, hope, and the belief that our needs are legitimate and can be supported. It takes getting over the intense embarrassment of asking/letting someone else do a stack of tasks that I feel are my responsibility. It takes letting people see us, our limits, our mess, our struggles, our bad days, me in a dressing gown at 6.30am getting kids ready for school, a doom box of paperwork with the important document for today’s medical appt lost in it somewhere, getting a call to say someone’s had a meltdown and the Support Worker doesn’t know what to do. Things that make me feel vulnerable. Things that make me feel like a failure. Things I don’t want seen that are now painfully visible and picked apart in functional capacity assessments and shift notes.

So if this has been hard for you too, take heart. You are not crazy, or ungrateful, or alone in this. There are many, many things that can make getting started with Support Workers difficult, and there are many things people have found can make it easier. People can and do navigate these hurdles and wind up with great support. Being able to understand and talk about the hurdles in the first place can help.

I’ve seen people who have never had a Support Worker, folks who had one amazing one they lost at some point, and folks so fed up with the workers they’ve tried they’ve just run out. It’s easy to get stuck. Many of us find the messy ‘first draft’ process just exhausting. We want to jump straight ahead to the part where things are running smoothly. The workers know us, they are attuned, they are responsive, and they know where the tea towels live. Dealing with the process it takes to get there… that’s another matter. The good part of all of this, the part that’s worth hanging on is this. We used to get block funding delivered to organisations who decided all of this for us. What support we needed, which workers they hired, and who was eligible. As much as I hate the workload, I love the freedom and flexibility. I get to hire the people I want, to do the tasks I actually need help with, at the times and in the ways that suit me best. I have the choice and I have the control. The hurdles come with that, but the freedom is pretty appealing when you remember how the system used to work.

Diversity Hurdles

Diversity is a common hurdle for folks. The main training for Support Workers is a Cert 3 in individual support. It’s generally focused on stable disabilities that don’t change a great deal over time such as blindness or an amputation, and on providing personal care such as assistance with showering, feeding, continence and so on. If you are dealing with a disability that fluctuates radically, has an unpredictable course, and/or includes mental health challenges then you’re a little out of the wheelhouse of a lot of the workforce. If you’re trans, or polyamorous, or CALD, or live in a remote area, or immunocompromised, or nonverbal, you’re dealing with all the extra issues of ignorance, confusion, stigma, or just unsuitable support from worker who don’t speak your language or understand your experiences.

Organisational Hurdle

If your disability impacts your organisational capacity this can also be a huge hurdle. Researching, interviewing, training, and managing staff can seem like a ridiculous extra burden if you’re the kind of person who forgets to eat without reminders.

Communication Hurdles

If your disability impacts your communication or relationship capacities you can find yourself swamped by the bizarreness of a system set up for people with disabilities that presumes you can communicate, negotiate, provide feedback, and regulate a bunch of relationships.

Poverty and Housing Stress Hurdles

Poverty is not spoken about enough in this area, but the power dynamics and relationship differences between support for those in severe poverty and those in good circumstances is profound. NDIS is not intended to relieve poverty or replace any other services which means when other services fail, we can have appalling situations such as one of my clients being funded for daily support but being homeless and his phone breaking – how can we even find him when he’s sleeping rough in the park? If you’re struggling on a low income or falling through gaps in other services, Support Workers and all the other NDIS resources can be so much harder to implement.

Trauma and Anxiety Hurdles

Trauma is a common and significant challenge in this space. Many of us have had abusive experiences in personal relationships, medical settings, and with providers. It takes a lot of courage or desperation to let strangers into our lives and homes. I remember once I was having a horrendously bad week, and a friend kindly arranged a cleaner to come to my home. I really appreciated the idea but I’d never had a cleaner visit before. I was so overwhelmed and embarrassed it caused a panic attack and I cancelled the visit – then felt awful about that and ashamed to let my friend know their kind gesture was too much.

What if getting help makes you dependent and even less functioning? What if you lose the help at the next plan review, just when you were feeling safe and secure and things were working? What if a Support Worker takes advantage of you, steals from you, manipulates you, deceives you? These fears are significant barriers for many people and can mean vastly underspent plans and high risks for people with disabilities who are not getting basic needs met.

Overwhelm Hurdle

Overwhelm is a constant, chronic, harrowing state of existence for many of us and trying to add in supports can be just more demands to feel swamped by. Inexperienced or mediocre workers need a lot of hand holding and this can be more energy than it’s worth.

Abelism Hurdle

Ableism is also a huge barrier for many of us and this goes two ways. Support Workers who don’t understand our disability can bring a lot of ableism in with them and it’s exhausting. They might look at your functioning body and say ‘you don’t need help with meals’, because they don’t know enough to recognise that your lack of hunger, anxiety about eating, severe sensory issues, and no cooking skills mean you are clinically malnourished and living on a starvation diet. You need support with planning, buying, and preparing food, and probably with reminders to eat and assistance to make it a more comfortable experience. Support Workers who don’t understand this can add to your sense of shame and invalidate your real needs in ways that leave you worse off.

We often have our own ableism that trips us up. Personally I’ve found this is often more severe for invisible disabilities, and more likely for issues that went undiagnosed or misdiagnosed for a long time. If you’ve spent years being told you’re lazy and just need to try harder, it can be mind bendingly difficult to ask a Support Worker to come and do that task for you. You shouldn’t need the help. It’s a waste of their time. It’s a waste of tax payer money. Someone else probably needs it more. It’s not that big a deal.

Specific Needs Hurdle

The more specific and inflexible your needs are, the more time you need to invest in training your support workers to do things correctly. There’s so many things that can mean our needs are very specific – because you have a life threatening allergy, a complex household with multiple disabilities, severe sensory sensitivities, a recent history of sexual assault, or OCD specificity about how your cleaning needs to be done. The general guide is: the more flexible we can be about our support the less time we need to invest in training and onboarding. The more we need things done a specific way, the more we need to educate, create checklists, have allergy paperwork on hand, and so on.

There’s nothing wrong if your needs are specific, I’m not judging. We all have them in some areas of our lives, and we are often pretty oblivious to how not intuitive they are until someone else blunders through and whilst trying hard to be helpful actually makes a mess of things. If you, like me, have a dog that must be put outside and have the laundry door closed when the last person leaves the house, you can’t assume a Support Worker will know to do that. And if you, like me, get busy and disorganised and forget about that, then you will absolutely come home to find your shoes demolished on the back lawn!

The first time someone helps you make a curry and cuts the onion into wedges when you need them minced finely so you don’t have chunks of slimy onion in your mouth when you’re eating, you will realise that what’s normal to us is not everyone else’s normal. If it’s important you’ll need to communicate it, and to do so respectfully and in an accessible way where your staff are able to remember it and get it right.

There’s many things people do to help overcome hurdle like this, and I share some ideas in this post Navigating Hurdles to using Disability Support Workers. But step one is recognising that the hurdles are real, even if you can’t easily understand or articulate them. We start by finding solidarity in our peers, finding we are not alone in our struggles, and moving away from shame and towards compassion. It is at times hard, and that’s okay. The opportunity to choose and create our own supports is truly an incredible one, and here in Australia we are the envy of the world for the freedoms offered by the NDIS. I am reminded of a line from a favourite book:

What she had begun to learn was the weight of liberty. Freedom is a heavy load, a great and strange burden for the spirit to undertake. It is not easy. It is not a gift given, but a choice made, and the choice may be a hard one

The Tombs of Atuan, Ursula K. Le Guin

Don’t give up, there is excellent, safe, inspired support out there.

Unpacking success in business: vulnerability, mistakes, and inclusion

Hello, lovely ones.

I have some wonderful news to share and I’ve been trying to share it for a while now. My business is finally a success.

Isn’t it funny how sharing our successes can make us feel so vulnerable? I’m very used to sharing things most of us prefer to hide. I’ve found value in it and learned how to deal with the downsides. I’m intimately
acquainted with failure and loss.

I’m less familiar and in a lot of ways less comfortable with sharing my wins. This is a big one, and right now I can finally feel it, and it’s not too terrifying to share.

20 years ago I wrote myself a goal list for my life. I wanted a lot of things, but my main ones were a job that paid well enough for me not to need Centrelink (welfare), a safe place to live, and a partner and children. They are not exceptional asks. But for someone like me they have been the work of a lifetime.

For 20 years, my work has tangled with my identity in deeply painful ways and brought a constant taste of failure to my life. I exposed myself as different before I found a safe place to stand with income, and that was risky, and it burned me. I have spent a lot of my life alone and naked in front of the crowd. And that created a community for me, it built connections I could not otherwise have created, and it humanised me in a world that saw me as other and less. It also closed so many doors, outed me early, and left me on the sidelines in a race that saw me as a dangerous liability instead of a resource to invest in. Self-employment was my remaining viable option, and it has been a brutally challenging path.

I have finally climbed my personal Everest. Work and money. I am officially broken up with that abusive relationship Centrelink. I’m financially independent.

It’s been scary to tell you. I didn’t feel successful, or safe, or like I’d made a real achievement, it just felt like a break in the storm, with more rains coming. What if shouting about it brought down an avalanche? What if I stumble and it all falls apart, and I have to crawl out of the rubble and tell you I’m back where I started? What if I fail again?

I will fail again.

I have been quiet, busy, kept my head down wrestling with it all. I have learned so much. I am now celebrating 4 years in NDIS space.

I also want to sing my achievements from the rooftops, because it looked so impossible for so long. So many people have helped me or struggled with me on this road, and I know there are so many other people like me out there wondering if it can be done.

When I started employing people I had three goals:

  • To do really good support work for our clients, something approaching the level of attuned and responsive care provided by good unpaid carers
  • To take really good care of our staff which is very rare in this industry
  • To run the business well so we all had security

I have to some extent achieved all of these, using a combination of approaches such as kaizen and co-design, values such as inclusion, and skills such as my capacity to engage in a vulnerable and authentic way with people I don’t know. Unlearning what doesn’t work and ignoring what everyone else is doing that creates the outcomes I don’t want has played just as important a role as finding the tools and approaches I need, and encouraging the values and methods to emerge from the process.

Sometimes I can feel a sense of accomplishment, but a lot of the time I’m just struggling with the things that aren’t working well yet. My fourth goal was added a couple of years in:

  • for my role to be a good fit for me

All are still in progress, and by the nature of this work always will be, but this one has come a long way. A couple of years ago I was lying face down in my driveway in meltdown over a distressing experience in this work. Most mornings I woke up hating my job. Most days I now wake up feeling reasonably good about it. There’s further to go but the profoundly unmanageable demands on me have been drastically adjusted and the fit is so much better.

Recently I have done a thing that clicked with me, that made me feel successful in a way nothing else has. I sent an email authorising paying my staff a Christmas bonus. There’s enough money in the business to pay me, and to give something to them too. I was walking on clouds for a week.

I’m autistic. I have ADHD. I have an unpleasant collection of chronic illnesses and a pain condition. I have mental health problems. I have a trauma history. I have struggled with poverty for much of my life. I have been homeless. We are plural/multiple. We are looking after a family with young children. And we are running our own business successfully enough that we no longer qualify for welfare.

None of those things went away. We are still plural. We still have ADHD. The pain and chronic illnesses have backed off and we’ve learned how to manage them well enough to have time to work – but even then I’m not working full-time. No one on my team is. Some weeks I manage about 10 hours and just keep the fires burning. I did not have to be cured of any of my disabilities to achieve this. I had to get the right support, the right advice, and to survive the shitty learning curve and all the mistakes I’ve made and the people I depend on have made.

One of my favourite quotes:

An expert is a person who has made all the mistakes that can be made in a very narrow field.

Niels Bohr

I am becoming an expert by the simple maths of running out of mistakes I can
make. And bringing with me a stack of advantages, and resources I’ve found, and playing to my considerable
strengths.

So what exactly have I achieved? I usually employ around 10 staff, most of whom are Disability Support Workers. We do something very unusual in NDIS space, which is to use a relationship-based, team approach. Most of our clients are neurodivergent and/or dealing with mental health challenges.

I now draw a regular income alongside my staff. I have taken out my first-ever loan and bought a car.

I used some of the profits to buy a caravan because we had 3 clients and 2 staff dealing with homelessness just in our second year of running. The homelessness resources here in South Australia are hideously underfunded and under-resourced. I have had staff sleeping on my couch and once had to drop a client off in the parklands with a warm jacket and a cheap phone. So I bought a caravan for emergencies and temporarily housed 4 people last year.

I have kept two highly vulnerable clients alive during the pandemic, fighting people up to the Health Minister of NSW and burning nearly every personal and professional bridge I had to do so. It worked. It was messy and exhausting but they were both at extreme risk including covid exposure and for one illness requiring ICU stays, and they both survived.

I’ve employed 39 staff total in this time, with a range of backgrounds and circumstances and many with their own disabilities. Some have been ridiculously overqualified but blocked from accessing employment due to issues like racism. I have been a step towards a bigger goal for people who just needed someone to give them a chance.

I don’t recommend starting a new business a few months before a pandemic kicks off, it’s stressful. We’ve survived a lot. Coping with $33,000 of unpaid invoices that took 9 months to resolve. Managing the theft of $23,000, changes to the award rates that looked like they would kill the business, and so many HR and SCHADS issues I’ve lost count. I have floundered as an inexperienced boss with disabilities myself and no road map on how to do that well. And yet, we’re here.

All our clients survived, some have moved on, some have stayed, many have begun to thrive, and some have had proper support during extremely difficult times in their lives. People who were trapped in isolation now have safe networks. People are getting fed good hot meals they enjoy. They are getting dental care, replying to their emails, getting their homework done, having birthday parties, passing rent inspections, getting first aid for self-harm from someone kind, decluttering their home without shame or pressure, getting the kids out to the park to play, having someone they can talk to about the voices, being able to use a clean bathroom or help to find a GP they can trust. It’s the most mundane and domestic things, and the most sublime and profound. We clean toilets. We change lives.

I’ve made plenty of mistakes, sometimes horribly publicly, and certainly sadly burned some bridges in desperation, but I’ve hung on, dusted myself off, got up and tried again.

As this team has come together the business has finally clicked over from being a hobby that pays for itself but not much more, to being a legitimate income for me. The nature of this work is that it’s in a constant state of flux. New staff, new clients, new NDIS rules and SCHADS conditions. Transitions in and out like the tide. I’m still refining the model, and there are still things I hate about it – like being constantly on call and struggling for work/life balance, but it’s easy for me to drown in everything that still needs attention. I wanted to stop for a moment and call attention to this impossible thing. I pay myself every fortnight. I pay taxes. I pay staff. We help people. We make a difference.  Some folks couldn’t find what they needed in support workers from other businesses. They are teaching us how to be better support workers and using us to bridge the gaps in their lives between their capacity and their dreams. We learn and refine each time, and something important emerges.

One of the key things I’ve learnt is that I can hire inexperienced disability support workers and train them myself, because I have those skills. But I cannot hire inexperienced administrators because I lack many of those skills and I can’t do the training. That was hard, and I struggled a great deal to depart from my preferred approach of hiring for values and then training people into the role. My disabilities drastically impact some of my administrative capacity. I can’t train people to do things I can’t do. So experienced administrative roles such as my business manager and my PA who can problem solve and experiment and function independently have been tremendous assets.

This job is all about people which means good HR is not optional, it’s the foundation. I’m on my fourth company so far. My darling wife Nightingale has provided stability and helped with tasks I’m truly bad at such as running the roster. I am time blind and have dyscalcula, which impacts my ability to get dates and times correct. No one in their right mind wants me doing scheduling. I once famously took my entire extended family to the Willunga Almond Blossom Festival 2 weeks early. I’ve needed people on my team who are better than me at essential tasks, and that’s taken a lot of time and a decent amount of luck.

My employees have added their knowledge and skills. Some have had terrible previous experiences and come in with considerable work-related trauma we’ve tried to use as antigoals to create safer policies and culture. Some have had experience in advocacy, community services, and management and they’ve been generous with that experience. I’ve gradually begun to find ways to manage some of my disabilities in this context as we’ve created a more inclusive workplace for each other.

I’m passionate about good service design. My years of experience in community services, peer work, alternative mental health, government, consulting, my training in public health, and my lived experience in disability and as a carer make me the right person to set up a business like this. I have found a place where my strengths are relevant and can make income. I have found a model where I get to provide services for some of the most marginalised people and still get paid.

I have had to sacrifice too. In the middle of a family lunch, there will be an emergency with a client rushed to hospital and I’ll be on the phone sorting it all out. I had to shut down every other wing of my business for 3 and a half years to focus on getting this running right and dealing with the pandemic. My ADHD brain found that nightmarishly hard at times. I have made almost no art and had almost no side projects. I have lived and breathed my family and this work. 6 months ago things stabilised enough to allow me the time to be able to re-open some select consulting work and that has been a joy. As much as it’s satisfying to figure something out myself and create it, it’s doubly so to have the kind of reach that means other people, organisations, or businesses can make something good too. I have honed a lot of expertise and it’s exciting to use it to support other people’s projects and watch them succeed.

Not everyone can do this. If I was still super sick this would be impossible. But many of the things that make this impossible have nothing to do with me, my disabilities, or my limitations. They are needless thoughtless exclusions that cut people like me out of the narrative of work and money and cast us away. It should never have taken me 20 years to get here, and it should not have been so hard. So much of the advice and training was worse than useless, and the intensity of trying to prove myself and prove my value as a person in this world has scarred and savaged me. This is not inspiration porn. It is not a stick to beat yourself with. This post might hurt to read, and if it does, I am so very sorry. I have cried a thousand tears. I cry with you. It isn’t fair and it shouldn’t be like this.

This may be a relief to read, for all those who have fretted quietly in the background about me. I remember being told once, there’s so much goodwill out there for you, but no one knows how to help you. I did not fit.

This may be hopeful to read. You too may not fit. Or you may be wondering if your autistic child has hope for escaping poverty if the people who apply for jobs at your business are worth taking a risk on if the dreams you have are in any way possible. If multiple/plurals can function in the world in some way or are doomed to be trapped in poverty.

Yes, we can, sometimes. This isn’t just about me, it’s about the context in which I’m doing what I do. I have had a raft of support, opportunities and strengths, alongside the pantheon of losses, impairments, and challenges. I’m still learning what’s made this finally work for me. I’m still finding words for the costs. I’m still figuring out how to stay afloat as things change. I’ll keep sharing honestly. Because all of us deserve financial security, we deserve jobs and public identities, and we deserve to be seen as part of the solution not just a social problem to be solved.

This is my story and it’s beautiful and painful. I’m sharing it because it takes courage to change the world and we are all changing the world. I have made a thing and it’s beautiful. I climbed a mountain. My feet are bloody and I have lost some toes. Failure is terrifying and necessary. Success holds its terror, it obscures and dehumanises and makes us want to keep our vulnerabilities more secret, it carries us to new heights to fall from, it is embedded with prices we didn’t realise we were paying. And it’s beautiful and powerful, the view across the horizon. Paying for Poppy’s dental surgery last year without needing to ask anyone to help. The illusion of independence and self-sufficiency, the protection from the consequences of our flaws and our soft underbelly, the place where we connect in humility that’s now covered by scales and cloth and so hidden we can’t even name the loneliness. I can afford my medications. I pay rent. I feel ashamed and survivor’s guilt for having enough in a capitalist culture that keeps the vulnerable below the poverty line to incentivise work. I wrestle with my place in a broken system when I am no longer at the bottom of it. I try to buffer the people in my care from the worst excesses of it.

Come raise a glass with me. I made a good thing. I dreamed something out of reach and have wrestled it down from the gods, eaten lightning. Come share my fire.