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.

Magnolia Speaks

Jay is still alive today. Alone in the house and crying. We are all trying to comfort them online. But alone.

Magnolia* is Jay’s overseas partner. They have gone through hell and back watching this from far away, working on documents to send to doctors about what has happened and what is needed, talking to the staff about how to manage the food and caring and what plurality means and reminding people about pronouns and trying to keep Jay safe.

Magnolia offered to write something we could share and yesterday their words were hopeful. Then last night we were forced to abandon Jay in their home once again and the bitterness and fear is horrible. Here’s what they want to share:

Magnolia Speaks: 15/4/2020

I’ve been writing it over and over again in my head, trying to find a way to tell you what this is like. Trying to find a way to say this is hell but those words are so overused I don’t think you’ll understand.

The last post I wrote was hopeful, but it’s hard right now to find the hope. I didn’t know what we had could unravel so quickly, but here we are. Once again I am watching, an ocean away, while my love is left alone, no help, pain mounting and sickness spiraling out of control. We all keep going onto the discord channel, family giving comfort, workers giving their free unpaid time to gently ask them, can you drink, did you take your meds, are you okay?

It’s a stupid question ‘are you okay?’ but we keep asking it. If okay means safe and stable, they’re not okay. But every time they answer there’s the one little glimmer of hope: not dead yet. Not dead yet. Still here. Still here.
“I’ll find a way to stay alive,” they promised us. I’ve watched them stay alive against all odds for a long time, and I believe in them more than I believe in most anyone. But they can’t go on forever with nothing. Even Jay acknowledges that.

Despite despair, despite the mounting challenges, Jay’s family is still here and we’re not going anywhere. This team is still here, and they’re all fighting for the same thing — to hear Jay’s voice and give them power in a world that wants to take everything from them. When hope is too weak to hold us up, we will move forward with the power of anger, the pure fire of our determination.

Please, if you’re reading this, please don’t give up. Keep fighting with us. Let’s make a fuss too big for the broken governmental systems to ignore, too big for the hospitals to wash away with a PR campaign, too loud to be drowned out by bureaucracy and polite dismissals.

Jay will keep fighting to stay alive,
and us?
We’re fighting to make something
worth staying alive for.

Magnolia
a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.
Original artwork by Jay. Image description a digital artwork showing a white dog sleeping at the feet of a person in a wheelchair. The person is brightly rainbow coloured with punk mohawk hair and glasses. They are painting a landscape artwork on an easel.

How to Stand with Jay

If you’re still reading, this is the one they wrote yesterday, when we had a plan and things looked hopeful again. We ride the waves of hope and despair, nothing stays static for long for Jay.

Magnolia Speaks: 14/4/2020

This last week, almost every time I woke up it was to my phone ringing. Check your messages. Please come help. What do I do, I don’t know what to do, what do I do? I can’t take this any more.

I’m not a professional. I’m just a disabled parent scrabbling to prevent yet another bout of homelessness. I have no medical training or background in care giving. And yet, somehow, I am one of the precious pins that is holding the fragile structure of Jay’s survival together.

I’ve been watching the system fail Jay for a long time, cursing the ocean between us and all the people who couldn’t find an ounce of compassion. Someone so funny, so persistently kind and gentle and patient, someone full to the brim with passion and fascination and ideas, and these agencies look and see…nothing. They don’t care enough to try to understand.
But we’re changing that.

There are two parallel stories happening here, and it’s hard to tell them both at once. Because one of the stories — one that needs told not just for Jay’s sake, but for the sake of thousands of people like them who are being neglected and left for dead — is a bleak one. It’s the story of people who are discarded by society for their differences, whose value is ignored and denied. That story is a cry for help, a warning, and a call to action.

But the other story, the one that is in my heart right now, is a story of hope. I fell in love with Jay a long time ago, and now I am finally watching other people see what I see. Not Jay the crisis or Jay the case, Jay the person. Jay the artist, Jay the dog trainer, Jay the inventor and explorer, in curiosity and silliness and devotion. Jay who remembers a silly typo from three years ago, who rescues a starving little cat from under their porch, who gets a dream and digs in and fights the world until they get it.

This is why I’m honored to wake up at 3 am and struggle through ten channels of chat logs to try and avert a crisis. Why every time I get a call I thank the people who called me to come. Maybe I’m not the best person for this job, and I know this is an uphill fight, but Jay is worth every second. And maybe, between us, we can make an uncaring world sit up and pay attention.

We can help them see how lucky we are
to have someone like Jay in the world.

Magnolia

Jay’s Own Words

It was going well. Then it went downhill. Then it all caught on fire again. I’m so tired and heartbroken. They are at huge risk again. I am at huge risk. My team is at huge risk. The NDIS changed the plan again and now we are not getting paid for our time from this point. They’ve expressly forbidden my team from returning to the house because Jay may have COVID, which means my team are not covered by any kind of insurance if they disobey. They have been forced to stand down. We tried to get Jay into hospital before the last worker finished the last shift, but the ambulance was full of latex and Jay started reacting. It’s just so impossible to keep things on track.

I’ve showered. My mouth has stopped swelling – that’s rather nice – turns out it was an allergic reaction after all. I’m kind of numb, which is think is good at the moment. Safer for me. Apparently I’m being accused of kidnapping Jay. And of endangering their life by trying to get them into hospital. And of endangering their life by trying to get them out of hospital. And of endangering their life by trying to support them at home. And we asked for COVID testing we were told we were stupid. And now we’re told we’re wrong for not taking them to hospital to get it. It’s day 9 post exposure and their only symptom of possible COVID is a sore throat. The blood in their catheter scares me a whole lot more. I have to sleep, I just have to. I have to sleep and hope.

I’m tired of talking for Jay. They are eloquent and amazing. They don’t need me to talk for them, they need the communication device that’s going to take a month to get here, and for people to start treating them with respect.

They wrote a blog post about this situation on their blog and I have permission to share it. Go and see their own words.

Different not less by Jay

How to Stand with Jay

Jay’s Breaking News!

We have 2 new people on board to help with my workload and both are on the ground in NSW and experienced with complex disabilities!

The changes to Jay’s NDIS plan that locked me and my staff out of being able to access it have not only been fixed, they’ve been made retroactive. That means the $10,000 or so I was going to owe in wages this weekend I can now invoice to the NDIS plan to cover. WHOOOOO

We have finally got high level medical support for Jay. Today we were called because they and one of the staff were exposed to a confirmed case of COVID-19 while in the local public hospital ED fighting hopelessly for help. That doctor tried to arrange for Jay to visit the same hospital for testing, given some of their symptoms could be COVID-19. When we explained the ambulances we’ve called refused to take them given they may have a neck or back fracture, they tried to get someone into the house. We all found it impossible to arrange for a swab to be done in the home because currently I’m more like to be able to arrange for a helicopter than I am for masks, gowns, and latex free gloves.

So he went off to speak to someone higher up and between them they saw what so many this past few weeks have failed to see: the bigger picture. COVID-19 is scary and potentially lethal for Jay and yet at present it is not even the most urgent medical need. We need proper holistic medical assessment, diagnosis, and treatment, and it’s not possible to get the tests we need such as scans done under sedation, in a home environment. Nor it is okay to focus on COVID-19 while they are at risk of death or paralysis if there’s a neck fracture, or death by drowning due to feeding in a prone position with a known severe swallowing issue.

Bizarrely enough, the COVID-19 exposure is the best thing that’s happened for Jay’s access to care. What the hell is wrong with our system that this is the case!?

We have a plan of attack, which we will swing into action tomorrow. For now, I’m going back to tackle all the admin that will make paying staff possible, and dealing with the remaining cash flow crisis – I owe thousands in wages. Tomorrow will be admission to hospital and me chasing up every loan option I have available.

We still need donations towards all the incidentals not covered by NDIS, but far less urgently than before. Mostly what I need right now is low or interest free loans so that I can resource staff to pay critical costs in their own lives while we are waiting on money to come in from the NDIS.

Gawds it’s SO GOOD to have a good update to pass on!

How to Stand with Jay

Brains Trust – give me some referrals

It’s been brought to my attention that I am flailing about online in a pretty distressed and intense matter and generally freaking out a lot of folks. I’m going to totally own this one! I’m in an unprecedented (for me, I suspect it actually happens pretty often) mess, and I hadn’t got around to mentioning it yet but surprise! I’m autistic. So I’m currently freaking out most of the non autistic people and most of the autistic folks around me are getting it. I can’t do all this shit and keep all these people going and try to keep you, the general public, feeling calm and soothed and comforted and safe too. I kinda need to, because half of New South Wales currently thinks I’m having the most public psychosis ever lol (funny that when I do have actual psychoses, I am public about them!), all the bastards who are blocking what Jay needs are flinging some mud, and I’m generally careening around doing my best to juggle 1,400 things while on fire. So my capacity to hide that I’m on fire is a bit shall we say, reduced.

Sorry about that – deal with it.

Feedback about how to handle this more effectively welcomed. 🙂 Feedback that amounts to “have you tried being less autistic?” not so much.

Moving on!

Help me with:

I need a GP or physician with experience with complex disability and spasticity. Anywhere in Australia. Frankly I’ll take anywhere in the world. We need specialist competent guidance please and we can link you in with tech. If Jay doesn’t qualify for telehealth with you, we will cover the cost through business/donations. Please get in touch with me asap with your qualifications and availability.

I need someone who can edit my youtube channel, I am using videos to communicate with my team and having trouble loading longer ones. The obvious option is to stop waffling so much but that’s never been my strong suite. Paid, obviously.

I need the NDIS medical clearance for accessing a hospital guidelines. What exactly do my staff need to do to be cleared?

I need a way to get Jay tested for Covid without moving them from their bed. Thoughts?

I have stressed, vulnerable people in shutdown because people keep phoning them. Can someone help me arrange new phones and sim cards with new numbers so they can turn the old ones to silent and address calls as they can. They can’t do this now because this family is trying to stay connected to each other. We need to split up the lines of personal safe communication from the lines of more public and stressful communication. I really like amaysim – can they help? They are both used to iphones. Will pay, obviously, from donations!

I need advocates. Autism, disability, mental health, queer, whatever. Throw them at me. I can’t do this alone, but we can do this together.

Get in touch with me.

How to Stand with Jay

Jay is trapped in bed

We need urgent help

Image courtesy of Image by Николай Егошин from Pixabay
Image description: large house fiercely on fire in the night, guttered with the windows burned through

Context:

Updated list:

More details:

In Home Safety Issues:

  1. Raised by RN
  2. Raised by Support Worker
  3. Raised by Jay
  4. Verified by Occupational Therapist – pending

Current Status:

I need 2 staff 24/7 with Jay and there is nowhere in the present home for them to sleep, and no separate spaces for them to have downtime. Due to severe sensory issues they also need to be able eat away from Jay, as most food smells are highly distressing and many cause meltdown/shutdowns.

An occupational therapist visited yesterday morning for staff training with safe use of hoist. Could not proceed,  Jay was in too much pain and then went into meltdown due to overwhelm. OT has shut down use of hoist, shower chair, and commode because of the severe pain Jay is experiencing. Given we don’t know the cause of the pain, we are risking potential severe injury to them if we mobilize them with the hoist.

Jay spent the weekend in the local public hospital ED. We called an ambulance for them when their pain escalated into crisis with symptoms mimicing a heart attack. Jay has no ambulance cover – we have promised we will cover it with our donations fund. (THANKYOU ALL!) Edit – wow it turns out NSW has different rules around ambulances to SA and there will be no cost. Awesome! We really need to do something about that here where I live.

Jay was unable to get proper care or assessment in the ED despite everything their entire tried over the whole stay. And I mean EVERYTHING we tried – but that’s a story for another time.

His GP was booked for an urgent telehealth appt over 2 weeks ago but has never called. This is the GP who has not followed up on a highly vulnerable trans client who’s hormone shot is over a month overdue. Apparently this is pretty common for them – can’t even blame COVID19.

Trapped in bed

Trapped in bed at present without capacity to get into their wheelchair. Jay now needs 2 staff available 24/7 to enact pressure sore protocols (need to roll them every 4 hours and apply cream to skin) – we think – we can’t yet get anyone into the house to tell us! Jay’s skin has already thinned badly due to a long time trapped in bed while abandoned in their home – also a story for another time, but I can tell you it’s been a really bad year for Jay.

We urgently need a GP for a wide range of assessments and referrals related to chronic and severe neglect.

We also have immediate medical questions we are not qualified to answer and we need a GP or someone trained to guide us!

We need from a GP: Immediate:

  • We need covid tests for Jay and all staff. The ED Jay spent the weekend in was a hotspot for covid but refused to refer or administer tests or medically assess the support workers. This means we can’t take them into places where high risk residents are in lockdown. We need clearance to open housing options or to know housing options closed because we are now infected and risk killing the rest of the residents. 
  • We need medical assessment and advice of the risks of using the hoist to mobilize into the chair, vs feeding someone with severe dysphagia while lying down in bed. 
  • We need to assess, diagnose and treat the pain crisis or provide referrals to those who can.

We have managed to arrange:

  • 9 April disability specific physiotherapist for telehealth assessment.
  • 14th April we have booked trans friendly GP: should be able to provide script for hormone, we can then hire a nurse to administer. 

Jay reports a bad sore throat today and has been feeling constantly very hot then very cold for the last two days despite no fever on the thermometer. This lack of temperature regulation is very concerning given other health conditions. Jay reports severe neck and back pain, radiating down both arms, which is especially concerning because Jay is usually unable to feel pain even if it’s a really bad injury. We are all afraid something very bad is happening medically. We desperately need a disability GP with experience in spasticity – we are making calls and waiting to hear back. If you know anyone – please get in touch with us urgently, my phone is on 24/7.

How to Stand with Jay