Let him eat cake!

When we set up G’s supported living arrangements three years ago we had a vision of how it would be. We wanted him to have a personal budget and we wanted to be fully involved in his life and enable him to have as much choice and control as he was able.

When he moved to his new house we were adamant about making sure the people who shared with him were a good match and his staff were a good match too.

Of course personalised support is not just about having a personal budget or choosing where to live and who with. It’s about choice, control and self determination about the smaller things in life, every day of your life too. It’s really about living your life just like everyone else does.

Having had some recent difficulties with G’s behaviour I’d realised that the personalised support we thought was happening was starting to slip into the more traditional “care” approach.

As far as I was concerned his behaviour appeared to be a direct result of not being listened to. G doesn’t use words to speak. He’s unable to sign, but uses gestures instead. He does however understand a lot more than most people give him credit for and what he was trying to communicate wasn’t been understood. He also appeared to be getting mixed messages from different people interpreting his behaviour differently and applying different approaches. Whatever it was we needed to get to the bottom of it.

For someone like G, the way he behaves is often the only thing that tells us when he’s unwell, unhappy or something is bothering him. He can’t verbally tell us if he has a headache, toothache, sore throat or anything else that makes all of us feel miserable or ratty. So a change in his behaviour has always alerted us to this. If this kind of aggressive behaviour was becoming more regular it would be difficult to know if he was unwell and I was very concerned about this.

So, I asked if I could go along to a staff meeting to talk to all the staff.

Before this I spoke to his team leader and a few of his regular staff and introduced them to some of the person centred thinking tools that I thought would help them develop a more consistent approach. I set up an account for G on Think and Plan www.thinkandplan.com and I went through how some of the tools worked. We started with the learning log

We need two new full time staff so I introduced the matching support tool (below is one we’ve started for G)

His staff team have found this really useful and with a shared password I’m able to see what they are doing and add things that I think might help.

At the team meeting yesterday the staff were already able to report that they had seen a big change in his behaviour. Although there were still a few issues (because they always will be with G!) they realised that with a few different techniques some of the battles they were having could be avoided. By sharing the learning through the learning log everyone who supports him is able to have a consistent approach. G is much happier and so are they. We also talked about having one page profiles for different situations, e.g going swimming, going to the doctors etc. So new staff or bank staff could have an easy to read document for different situations rather than wading through his person centred plan. And, we’re looking at updating his communication chart.

I gently reminded them that their job was to support him to do the things that he wanted to do. With a personal budget he is actually paying their wages (albeit through the Provider organisation that employs them). He isn’t a child who needs to be controlled, dictated too or “do as he’s told”. He’s an adult with a mind of his own, who despite his learning disabilities knows exactly what he wants and what he doesn’t want. This may sound like common sense (and it is really) but for people like G who have profound learning disabilities it can be so easy to resort to a “care” rather than “support” approach.

It’s also easy to ignore what is being communicated and interpret it as “challenging behaviour”


G was going swimming with the Team leader, J. After swimming J always took G for a cake. When other staff took him swimming they didn’t take him for a cake afterwards so he started fighting them to go for a cake in the cafe before he went swimming. This resulted in a battle of wills, with staff trying to get him to go swimming and G getting cross and hitting them because he wanted a cake NOW! (because he knew he might not get one later)

My response to this was…if he’s telling you he wants a cake, let him eat cake. Don’t turn it into a battle. Having a cake isn’t going to kill him, he’s not going to swim twenty lengths and develop cramp from eating before hand!

For people like G having self determination, choice and control over even the small things in life is pretty difficult and often its those small things that are the most important to them. When you have profound learning disabilities and an IQ of less than 20 (according to psychometric testing theories) few people realise that you have something to say and can make your own choices and making sure you do is fully is dependent on others. It’s all too easy to misinterpret his behaviour and see it as challenging but put yourself in his shoes …

Imagine someone was trying to make you do something you didn’t want to do or ignoring what you were trying to tell them and making you do it anyway…how would you feel if you couldn’t tell them verbally?…what would you do to get them to listen?

Using person centred thinking tools has made a real difference already for G and I’m so pleased that his staff team have embraced these ideas. Of course all this information was already contained in his person centred plan but this was all contained in a large file that I doubt anyone really revisited. We needed to find a way of ensuring that it stayed “live” and was constantly used to check what was working and not working for him. The balance of what is important to G and what is important for him had tipped to be more about what was important for him. Keeping him safe and healthy is of course important but when what is important to him was being overlooked life was becoming pretty unhappy (as it would all of us!) Crucially, none of this information was being shared consistently throughout the whole team.

G needs life to be fun and it felt that because he was the behaving the way he was no one was having fun with him and everything was getting a bit too serious. They needed to be reminded that the two things were related and that having fun, making a game out of everything you do with him is the best way to support him and very important to him…. and so, quite obviously, is eating cake!

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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