Let's talk about in-home support

CW: Suicide, self harm, Mental health issues 

I saw a couple of posts on Instagram this evening that got me thinking.  The first one was from Mentally Unstitched, a clothing brand that is "Clothing designed for comfort & mental wellbeing😌☁️🤩 Stitched to make you smile 🤩"  The brand is fronted by Millie Haywood, a woman in her early 20s who was diagnosed with Autism frighteningly recently after having spent time in a mental health institution.  Her post this evening was a carousel post about her time in the mental health institution and the cruelty she experienced while there.  Almost directly underneath it was a post from a Scottish organisation (I forget if it was the Scottish government) about how disabled people should not be institutionalised and should receive support in their own home.

This made me think about my own support journey.  As someone who is Autistic, partially sighted, with depression, anxiety and more recently diagnosed as PTSD, adult life is extremely difficult.  You are expected (as are most adults) to be able to balance living (household chores, budgeting, bills, paperwork and other things) with looking after yourself (making sure you eat properly, exercise, hygiene e.g. baths/showers/brushing teeth and keeping up with medical conditions if you have any).  Adults are also expected to balance all of this with being able to go to work.  I hear you say 'well of course.  That is just life', and yes it is.  However if you are neurodivergent, this becomes a juggling act where any number of plates can, and do fall with intense regularity.

While I was at University (I studied BSc Computing Science at Aberdeen University and graduated with a designated degree back in 2011), I had had quite a lot of support with managing my studies, as well as my mental health.  It was good to have someone to be able to talk to, that would help with certain life things if needed.  I was very lucky with the support I had at University.  However, when I graduated in 2011 I fell into what I call a 'black hole of support'.  Essentially when I left University, there was no one to turn to for help with life admin, or just even someone to talk to face to face.  I had signed on at the Job Centre so was expected to look for work and sign on every two weeks under threat of being sanctioned, or having my benefits removed, which again is perfectly normal for most adults.

Unfortunately I am not a 'normal' adult.  I have multiple disabilities, and had acquired PTSD from a negative experience with police a year earlier.  By the summer of 2011, I was self harming and actively suicidal.  I had been under the care of the Royal Cornhill Hospital since 2009 undergoing Cognitive Behavioural Therapy and it was not working. The problem is unless CBT is adapted to autistic individuals, it has a bad habit of not working if you are neurodiverse. At this time I was the NUS Scotland Disabled Students' Officer, but because of my mental health and autism, I found myself in trouble for things that had happened during meltdowns, which lead to me wanting to harm myself (I hated myself because of meltdowns) and wanting to - what is it people online say these days - self delete (The one way I can control meltdowns is to self delete as dead people don't have meltdowns).  Luckily I was able to navigate my way away from the worst of this by watching a lot of episodes of The Computer Chronicles on Archive.org, an old show that chronicled developments in computers that ran from 1983 to 2003 on PBS, fronted by the late, and definitely great, Stewart Cheifet.  This together with the YouTube channel The Nostalgia Mall (formerly Roadgeek) helped me to rekindle my love of retro computers, which started me on the road to wanting to run my own business, but also to start a short lived activity called RetroFest.

 

 Anyhoo, back to my support.  I felt that I was needing support because I was alone a lot of the time, and I don't cope being alone for long periods of time.  I had liked the idea of supported accommodation, but to be able to get anything, you need a social worker, and to gain a social worker, someone has to take you seriously enough.  I had phoned GDox (NHS 24 on 111) on a number of occasions to talk about my mental health, and they would ask "what do you think a social worker is going to do for you?"

This started my long hard slog to try and get support.  I had joined  a Facebook group called Autism in Scotland which I found to be extremely supportive, and through them I was able to meet people in the Aberdeen and Aberdeenshire area.  They too tried to help me.  It wasn't until someone I had known from my time at the University of Hull, who herself was on the path to becoming a social worker herself got in contact with Cornhill that I was even seen.

The assessment took about a year to complete.  In that time I had tried and failed to run a business (I guess you could say I tried to run a business, but the business ran me into the ground).  I think it didn't work because of my mental ill health.  I wasn't coping due to the extremely small amount of face to face company I had at the time, and found weekends especially isolating.  Eventually, I started receiving support from December 2013  At that point I had had to move into council accommodation, going through the homeless route, which meant I had to undergo a double move.  The support I originally received was extremely poor.  There was a lot that they wouldn't do (I had been moved in a hurry so had lots of things in bags and boxes, and they would not help me, a visually impaired person, look for things in bags).  By July 2014 I had had a change of social worker (two changes to be exact) and she helped me to obtain better support.  This came from Autism Initiatives Scotland (who would later become Specialist Resource Solutions).  Whereas my previous support people would constantly tell me what they couldn't do, the support person from AIS was happy to tell me what they were willing to do.  What was the first thing I did with them?  They took me to Aldi at Aberdeen Beach to do my shopping in their own personal Vauxhall Corsa, followed by a cup of tea at a local beach-front café. From then on, I would have support from a number of different people who helped me with a number of different things, from getting the messages (shopping), to important life admin type phone calls, to supporting me to Doctor's appointments and finally helping with cooking, cleaning or even just checking my fridge to see if something was out of date.

 

Over the years, my support has been invaluable.  As well as helping with normal errands, they've driven me to my volunteering before the session would come to an end, and when I needed surgery in 2018, they supported me all day in the hospital.  I've also been able to talk to them about things that are troubling me and they've helped me to feel better.  I was even able to continue to receive support (albeit at a slightly reduced rate) during the COVID-19 lockdowns, which was extremely helpful as they were able to go and buy shopping for me and deliver it to me.  Before I moved house, one of my support people helped me go through things that I no longer wanted, and helped to pack boxes. 

 Thanks to my support, I've been able to live a better quality of life.  However, in 2024, Aberdeen City Council decided we should all be paying, even if we had not been doing so before.  As a result, something that was essential to me suddenly carried a luxury price tag, a tag which I could ill afford.

Since moving house and changing local authorities, my eight hours of support have been replaced with zero hours of support. I had previously written down all of the things that my support helped me with, and when we spoke to someone from Adult Social Care, they immediately shot down my need to have someone support me to go shopping, saying that support won't drive me anywhere, and in any case, I'm not eligible for any support in Aberdeenshire.

I'm glad I have the company of Victoria. It is good to have someone to live with and to have a household; it is something I have wanted ever since I left home 20 years ago.  However I do feel that I still need that bit of extra help.  I've not for example been able to fully unpack and organise things due to my executive dysfunction.  If I were to receive support, I don't feel I would need anywhere near as much.  There are things in my new flat that make it easier to live.  Using the kitchen for example is a lot easier because there is more counter space and better lighting, plus no one can underestimate the value of having a dishwasher to take care of all the dirty plates when you are done eating.  Also, staying in the centre of town has meant that things that were once a car ride away, are now just a short walk (for example the post office), and Inverurie is such a good wee town for doing the shopping that people actually come out from Aberdeen to do so.  Also, I can honestly say I am in no way suicidal, and thankfully for me, self harming is something that is pretty much in the past.

 

However I could still use support for keeping things tidy, doing the weekly shop in Aldi (staff there are difficult to find, and they are under no obligation to help you get your shopping, though some staff will do so. Also I need help with finding appropriately dated items, so I'm not paying full price for, and taking home short dated food, that then goes off before we've had a chance to consume it.)  I could also use some social support for finding groups in the community so that I can make more friends.

Unfortunately, because of the move and the fact I've not had any support since February, coupled with the last four years of mental health crisis, I am in Autistic burnout (I will have to do another post about Autistic burnout) and I'm finding it difficult sometimes to do even the most basic of tasks.  Having a wee bit of support to lend a hand here and there could help me to be able to recover and make the best of what I now have. 

It concerns me from what I have heard from various people that a lot of people with disabilities are ending up incarcerated in mental health facilities (which is NOT ideal if you are autistic), or worse, that they are now in the 'forensic system' (i.e. they are known to the police due to criminality reasons).  Meanwhile, councils are cutting or pay walling support, and demanding ever higher levels of council tax. Yes, things are more expensive today, but why should people with disabilities be first on the chopping block.  With the right support, we should be able to live fulfilling lives, and that access to a fulfilling life should not ever be questioned. Do we question none-disabled people about their entitlement to a fulfilling life if they are appearing to be happy and content?  No we do not, that would be a very strange thing to do!  People with disabilities should be able to receive the support they need, and not have to pay a luxury price tag to receive it.