Second part of my series on Supporting People with Learning Disabilities.
We now have a picture of what can make a good support worker, I should also address what I have seen that is wrong with support staff. Sometimes doing what’s wrong isn’t just the opposite of what is right. Sometimes it’s the things that can appear innocuous that have the most substantial affect.
A personal, and professional bug bear of mine is when I see support workers reading a book or newspaper during their time with a person, not reading it with or to the person, but just sitting there reading it. You are getting paid to interact with a person and you sit and read the paper?
This happens often, and usually where I work (if I am managing) I will ban newspapers, staff can bring them, but can read them out of their work hours, otherwise they should be put away.
I was supporting a young man named Leroy, who was very complex and not someone you could ever let your guard down with, he often presented sexualised and physically aggressive behaviours. A new worker had come to shadow me and be inducted. I met him outside the house and he was holding a satchel and a large novel (Moby Dick if memory serves)
We chatted went inside to meet Leroy and his family, the worker seemed blasé about the information we were giving him about Leroy, but I didn’t know him, maybe nervous, maybe just a chilled out person?
We’re about to leave the house and he asks if he can leave his satchel there and collect it when we get back. Leroy’s mum says fine. But he holds onto his book.
“Are you leaving that here?”
“No, thought I’d take it”
“Why? We’re going bowling”
“I could read on the bus, or if I get a break”
“You get no break, this is a 3 hour session, you can have a break when you finish”
He took the book anyway, I suggested to my manager that he wasn’t the kind of person we needed to work with Leroy. Particularly as I just told him that Leroy often touches people on the bus and it was high risk environment. The sort of environment where you must give your full attention.
The issue of having a break is significant, support workers can easily go a whole day without any time off between or during sessions with the people they support. I got used to it, many of us would complain, but my attitude was I’d rather be busy and the day flies by, though it would have been nice to sit down to eat sometimes… It can be exhausting, and like in many jobs support staff can be overworked and underappreciated. A break would be nice, but disabled people don’t stop being disabled for 15 minutes for their staff’s wellbeing.
I would take a book to work sometimes, to read on my way to see someone, or in one situation I was supporting a young man to college and while he was in his 2 hour long class I just waited outside in the reception area so I would read, another aspect of support work, sometimes you have to wait and wait and wait, this is the kind of patience you need. At times I felt in that situation that I was just being paid to read, but should something have gone wrong, which was a risk with that person, then I needed to jump into action.
It is just part of the job, people should be told when they get into it that this can happen.
Another aspect I have come across which is always contentious is eating, many staff feel that they should eat separately from the people they support, and I always believe you should eat with the people you support.
There will be exceptions, it may be the person doesn’t want you to eat with them, or that there’s dietary requirements that have to be considered. For example, a man I worked with who was incredibly overweight and on a very strict diet, he had many issues with food and always asked for unhealthy things.
One day I walk into the room he is in and he is pointing furiously, the support worker is sitting in front of him eating a packet of crisps, acting like nothing is going on?? The motivation to get him to stop was that the person would hit him if he withheld the crisps, not the fact that this person was sitting there watching someone eat something he couldn’t have, it may seem minor but it was a serious lapse of consideration.
Some people don’t like to eat with the people they support, some places I have been where staff would bring in their own cups and crockery to use when at the day centre or person’s home, because they didn’t like using the same crockery used by disabled people? That kind of thing makes me wonder how they perceive people with disabilities. They aren’t infected with autism, you’re not going to catch Fragile X. A bad dose of Tuberous Sclerosis has kept me in bed all week… I’ve met many people with disabilities whose hygiene is poor, but that’s part of our job, to support them to understand why cleaning and changing clothes is important, it’s not just a value question, it is a health question.
Along with newspapers, another annoyance is staff talking on mobile phones when supporting someone, and this applies to work calls or personal, it’s that person’s time, unless the call relates to them then it shouldn’t happen. Besides the personal side of it, the fact that is likely tax payers money paying for that person to be on the phone should be reason enough.
Many times I have seen people who need a great deal of prompting to engage in an activity, and this is documented clearly in guidelines, otherwise they will just sit there.
I walk in, staff on their phones…
“He said he didn’t want to paint today”
“So you decided to call your girlfriend about it?”
Even worse, they are speaking in a language that the person they are supporting doesn’t understand.
Now, would you spend time with a person who has a communication impairment, understanding the world is already incredibly difficult, and the person who is supposed to be helping them is uttering a series of sounds which make no sense whatsoever?
I love diversity of culture, and love languages, but you need to speak the language the person understands!!
A really controversial issue is around socialising with the people you support, I always say to staff to follow the policies, but use discretion in social situations.
I have gone to the pub with people I support, after hours, to celebrate a birthday or whatever it may be. I tell staff, you can go drinking with people, going to the pub and socialising is very important for many people, but don’t get too drunk, remember you are still staff even if it is after hours. Some people are fine having those they support at their homes, over for dinner etc. Personally I’d rather keep my home life separate from work.
Some staff will never go out socially with the people they support, which is fine, their prerogative. But we have to remember that for those we support, they see staff more than anyone else, we do work with people around social skills, around relationships, and positive modelling is valuable.
One young woman who was having her 30th birthday, we went out for drinks at a local pub. She had a history of socialising with some very dodgy characters, crack addicts, people with serious mental health issues. At first it was a few staff and a few of her peers that we also supported, then some of her social group started coming, they were behaving oddly, being annoying, being too loud, others in the bar were looking at this strange bunch. I looked over at her, and I could see she was seeing these people from my perspective for the first time.
After we left the pub she told me that she had now realised that a lot of her problems were due to these people in her life and that would change, she would be arrested 3 days later.
In a way, that was a social event that helped her, it could have gone the other way, but by having staff there she was able to view her experiences differently.
However, drinking with the people you support should be done responsibly of course. A man we supported who went out several times a week in a minibus to do a recycling job had been seen in a pub with his support worker.
The worker was enjoying a pint of beer, half way through his shift, in that he was still to be driving for another 2 hours, after drinking…instant dismissal. Being unique is great, being a dynamic and creative person is superb, but you still need a generous amount of common sense.
People get tired, they fall asleep. Have to admit I’ve nodded off while sitting in front of a computer, but never with a person I’ve supported. But I have seen workers fall asleep during multi-sensory sessions, art sessions, on trains and buses and even in a minibus, while people sat in the back waiting to do an activity!!
As I said, breaks are a rarity but to have the disregard to fall asleep while supporting people really does make support workers look bad, I’ve met parents who have challenged support workers for doing this, I’m glad they do, I would hope many members of the public would do the same. There was even a case where a journalist found some staff asleep in a minibus and published photos of them.
Supporting people in public is tough at times, particularly when that person may have autism, and may make unusual vocalisations, or have curious ritualistic behaviours, one man I supported once stuck his finger in his pants then showed me the faeces on the end of his finger, on a train station platform, then proceeded to taste it before I could stop him, that could have looked bad for me, but I managed to keep it discrete.
Another young man I supported had little sense of what was appropriate to say in public. We were often on buses, and he would very loudly complain about the group of young men listening to music or talking very loudly, a group of young men who were looking for a fight, for any reason, fortunately again I managed to control things. He didn’t have the common sense social filter I had, he didn’t understand the way others may react.
Staff can get assaulted by the people they support, or work with someone who will expose themselves in public, in front of children, spit at children…
One man I supported, who was in a wheelchair and experienced immense amounts of anxiety in public, we would be walking down the road, me pushing him. All the way I’d be reassuring him, talking through what would happen, it would be OK, his anxiety building, then in front of us a mother with her 3 or 4 year old child.
“Get out of the fucking way you fucking bitch, oh my god, fuck off”
We would turn around and go home. I would always explain to him afterwards why we came back, because at the time he wasn’t in control, his anxiety had taken over and for him it was impossible to be reasonable about anything at that point.
As a support worker you will find yourself in these kinds of situations, I’ve lost count how many times I’ve been supporting someone and they sit down in the middle of the road or footpath and refuse to move.
But you must retain your calmness, must risk assess rapidly, but remain calm…
At any point someone can take things the wrong way, for the most part I have found members of the public to be very understanding.
One day walking down the road with Leroy, he was in a particularly hyperactive mood and bumping into every person who got in his way, I was stressed, apologising all the way.
Then, a man comes out of a shop, a huge man, muscles, tattoos, Leroy bumps into him and doesn’t move, he stares directly at the man and smiles… the man backs away and apologises… Leroy looked, well….crazy… he was scaring people.
Some people will think that he shouldn’t be out in public like that, or I should control him, but it’s never that simple, and sometimes you don’t know it’s going to be one of those days until it actually happens.
Even when you are doing everything right, you should be on your guard that something may be perceived differently, and remember that you are representing all support workers, not just yourself and your organisation. People are quick to demonise a group if even only one person does something wrong in their eyes.
One nurse or doctor makes a mistake in one hospital, then that entire hospital is seen as bad, then the entire trust then the entire NHS, our action or inaction can affect many others.
Going back to something I mentioned earlier as it’s something that bothers me with some support workers is they feel sorry for people with learning disabilities. Sympathy is good, but empathy is better.
Empathy however, takes some level of imagination, and I have met people who don’t really seem able to imagine what it’s like for other people. I don’t think it’s truly possible to have a complete and full understanding of another person’s experiences, but you can imagine.
I have moved to another country, I don’t know what it’s like to be a Nigerian who moves to the UK, but I can make a good guess.
We shouldn’t feel sorry for those we support though, if anything we should hold people with disabilities with high regard and respect for managing and struggling to get by at all in an unfriendly world. Particularly when you meet a person with a disability and they have a positive outlook on life, while the rest of us are complaining that our train is late, imagine not even being able to get on a train without help, imagine not being able to count your money to buy a ticket.
If you treat people as though they are unfortunate, they will start to act as though they are. Treat them like they are a champion and they will act like one.
Related to the sympathy side of things is another issue that arises often, patronisation.
A phrase I detest, I’ve lost count of the amount of times I’ve heard support staff say this to grown men, what’s wrong with
Or “Nice work”
Many people with disabilities that I know get furious at being treated like children, a staff member will organise a movie night at a social club, they decide to bring along a DVD of the latest Disney film.
“We don’t want to watch a cartoon, we want to watch The Texas Chainsaw Massacre”
Some people with disabilities in adulthood can be childlike, very different to childish, but it’s more about having a purity of experience that a child would have, not about being immature.
It’s wonderful to see someone enjoying something simple while unburdened by the worries of the modern world.
Age appropriateness is always an issue, many people with profound and multiple learning disabilities genuinely like to play with children’s toys, maybe they are developmentally at a child’s age cognitively, but maybe due to their disability the toy is simple and right for them, maybe for them it’s a sensory experience and adult things just won’t do.
I worked with a young man years ago, he was around 22 at the time, I shadowed his current support worker one day. We were on the bus to wherever we were going, and the worker said we needed to get off and buy something for lunch, no worries there.
We get off the bus and waiting to cross the road, he takes hold of the young man’s hand and they walk across the road fingers intertwined like a couple in love…
I was very new to the service at the time, so when I went back to speak with my manager we discussed it.
“How was it?”
“OK, but one thing seemed odd, the support worker held his hand when he crossed the street, is that normal?”
“Do you think he needed to, to be safe?”
“No, a hand on the shoulder would have done, it didn’t look good”
The issue isn’t the handholding per se, some people prefer this, but when it’s a grown man or woman you need to make sure it’s done in an age appropriate way. And again, things can easily be misunderstood by others.
Many of the mistakes I have made, and seen others make have been due to lack of knowledge, well intentioned, just wrong. Some things people really do think is the right thing to do, very nice people thinking that calling a grown man a boy is a good thing to do, a term of endearment, but for me what is underlying that kind of a statement is some degree of pity.
I’ve heard members of the public say things like:
“It’s so sad, the way they are”
And similar things, but when people do say that I always respond with something like:
“It’s not sad, this person enjoys life, has ambitions and is one of the happiest people I know, nothing sad about them.”
We have to address our own attitudes when supporting people, think about what we’re trying to achieve, there was a time when “caring” was enough, but the world of disability support has changed significantly.
Paul was my first referral when I started work in The Goldhurst Project, the remit was to support his staff team at home to manage his behaviour and help them to develop a day service that met his wants and needs.
Paul lived in his own flat and had 24 hour support. Paul had Down’s syndrome and Autism, he was non-verbal and there was a suspicion of early onset dementia (with Down’s syndrome this can be common)
I went over on the first day and met with Paul and his support worker Mike. He was sitting in what I call the “Buddha” position, the first thing I noticed was his upper lip had an indentation right below the nose, this was from him frequently pushing his thumb into it, very hard. This was one of several habits he had which would have caused great pain to anyone else but for him it was normal, no doubt a sensory thing.
Mike explained to us the behaviours they had to manage, tipping over furniture, throwing objects, kicking, stomping on feet, urinating on the floor, throwing faeces and general smearing of faeces.
In addition to all of this he also had very severe seizures , after which would be the times he would present with the most extreme of his challenging behaviour and scratch his own arms and face till they bled and do the same to staff if he could and trash whatever room he was in when this happened.
I spent some time observing, I saw some of the behaviours and gave staff advice, some of it was simple protest, most of it was communicative. For example, his favourite thing to do was to go down the road and get fish and chips, so I suggested we try that as a trip out. We started off and about every 10 metres he would sit down on the footpath and not move for several minutes. This may have been related to his memory, hence the suspicion of dementia, particularly as people with Down syndrome have a high likelihood of this, but I felt it was more to do with his Autism and finding it difficult to take in too much information without losing track of where he was or what he was doing. The outside world, even a familiar environment contains a vast amount of stimulus that can affect a person’s concentration.
I suggested to Mike that maybe it was due to him needing to be reminded constantly what was happening, keep telling him along the way, which worked. He was simply forgetting what we were doing.
He used sign language to communicate, most of what he said was basic words, toilet, tea, food etc. But as it turns out he had a vocabulary of at least 70 words, and one speech therapist had said she thought it was closer to 300 as they had worked with him for years to build up his communication skills. The problem as usual, was that no one else around him knew all those signs.
Paul had lived in Kentish Town most of his life and was well known locally, when we went out many people would say hello to him, for the most part he didn’t care, he was one person who genuinely appeared to have no need or desire to interact socially, he was happy on his own and just wanted staff to do things for him.
He had learned that by presenting challenging behaviour he could avoid any kind of demand and had been deskilled over the years but having too much done for him. He had also been banned from several local places including the nearby pub where he had thrown an ash tray through a brand new window and various shops where he had harmed people or destroyed something, but he was so familiar with the local area it would have been counterproductive to move him elsewhere.
One day I got a phone call, there had been an incident. I was annoyed, things had been going well and the behaviour had been reduced, staff were managing better… I was worried what he had done.
“No, no…Paul is fine, he didn’t do anything”
“A staff member had left him in a local burger shop”
“Apparently he was late for his next shift, he called the next staff member and told him he was leaving him there”
“Oh my god!!”
“Yeah, I dismissed him”
Now, judging by my description of Paul and I’m sure you’ll agree, just for the epilepsy alone, what on earth was that person thinking? How could he leave this man in a shop without professional support?
Apparently the shop owner knew Paul well and said it was OK. I did eventually meet the shop owner and he was very nice, but on that day we had a major incident when Paul nearly choked on a bit of burger and trashed the shop and kicked his support worker.
Most errors are just a lack of common sense, but this one astonished me, that someone who knew very well the likelihood that Paul could hurt someone or himself, challenging behaviours were a daily occurrence for Paul.
Regardless of that, we managed to get things working well enough and reduced the behaviour to a much more manageable point.
Around two years later, I was soon to move on from Goldhurst and I get a call from the people who are now providing support for Paul, a supposed autism specialist provider, they were having problems, Paul’s behaviour had become unmanageable…
“Oh, what’s happened?”
“He’s smearing frequently, hitting staff, throwing objects, he sits down when he’s out, and we don’t know what to do during the day”
“Have you been following my guidelines?”
We had handed over all the information to them, even done several days workshops with them to ensure they could work well with him, I had even called in a former manager who worked with Paul years before myself.
But despite all of this, staff hadn’t read the guidelines, they had a high turnover of staff, mostly agency workers.
“You’ll never manage his behaviour without consistent staffing, it takes him six months to get used to a new person”
History does repeat…
“This is exactly the same thing I did two years ago, just with different staff, we need to make sure that people learn from what has happened before”
“I know, I know, we will try”
The work continues, the same results. I don’t even need to do anything new, just follow these guidelines, respond in this way, learn more sign language, he likes ice cream, don’t fill his tea up too high.
I had remembered everything from before, I can’t say I have the best memory in the world, but when it comes to people I have worked with, even a very long time ago I can remember in detail all their needs, likes and dislikes and so on. And many times I have had people come to me with…
“I just started working with ….. Can you tell me about them?”
“I haven’t worked with them for 5 years, but yeah…”
I do my work with Paul and move on, thinking things have moved on, he’s doing well… then one year later.
“He’s smearing frequently, hitting staff, throwing objects, he sits down when he’s out, and we don’t know what to do during the day”
Déjà Vu is real…
This time I am furious, exactly the same again…
What I learned was that this situation was typical, providers, staff, carers, social workers often forget, people often end up having to use their behaviour to get across messages they have tried to express before, and what if I wasn’t around, when I’m not? Someone else comes in and will probably do exactly as I had done, and people like Paul have the same experience again.
It’s a major short falling within social care, and it’s no wonder some people end up hospitalised and never make progress.
Some of these examples highlight simple lack of common sense, some are just reasonable human mistakes, some are massive and fundamental errors that can and often do have a lasting negative impact on a person’s life. Reading a newspaper or taking a phone call may seem innocuous to most, but it can mean the difference between a good and bad day. I worked with a young man who had taken to throwing rocks at people, no one seemed able to control this, so I asked him.
“Are you angry?”
“What makes you angry?”
“My support worker… he’s always talking to his girlfriend on the phone”
“So you throw rocks to get his attention?”
It was that simple.
I walked away after a job well done, but an array of professionals had been brought in, yet no one thought to ask him what was annoying him, often a simple solution to what seems like a major problem.
I may sound unforgiving at times, I am aware that I have a set of skills that not everyone has, but for the most part these are mistakes that should never happen and can be easily avoided if people just think, think about what you are doing.
 Shadow or Shadowing is the term used to refer to inducting a new support worker when meeting a person, they shadow the other staff before independently supporting them.
 a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, and lung and kidney disease.
 Down syndrome (DS) or Down’s syndrome, also known as Trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. Down syndrome is the most common chromosome abnormality in humans. It is typically associated with a delay in cognitive ability and physical growth, and a particular set of facial characteristics. The average IQ of young adults with Down syndrome is around 50, whereas young adults without the condition typically have an IQ of 100.
 See chapter 12
 LDT, every local authority/council in the UK has one (although in rural areas they often cover several councils)
 Local term for Social Worker