‘They don’t understand’

How often have you heard “the person doesn’t understand; they don’t communicate, so can’t make a choice”? Perhaps, like me, you hear this all too frequently. From many people, some of whom should know better. I know this statement will prove controversial, but if we can get a conversation going, this blog will achieve something.

I am well aware that many of the people who support people with complex communication needs wouldn’t say this, but sadly, some still do.

How do we ensure that those who face difficulties with communication are really involved in their everyday life?

How can we ensure that they are truly listened to and fully included in the recruitment of those paid staff who support them, with very personal and intimate care and support? Put yourself in their place. Wouldn’t you want to have a choice, even if it is difficult for others to get your views? This has been a very important part of my working life; even my dissertation looked at this area.

How do we make sure that we follow the ‘No decisions about me without me’ mantra? How often do we record things without thinking about what the person would like to have recorded (in a format that makes sense to them)? Do we really need all the information that we regularly record in services? What does this information actually tell us about the person? Yes, I am aware we need to record some, but how and where this is done should be separate considerations.

Would you like some practical ideas to take away and expand upon that really try to put the people we support at the centre of decision-making, no matter how profound and complex their support needs are?

At Learning Disability Today London 2018, we will discuss how we include the people we support in staff recruitment. They don’t need to ask questions or sit through boring interviews or presentations.

The ‘3Ms’

We will also tell you about our 3Ms project (Moments, Memories, and ME). We are rolling this out across Sense, and staff are enthusiastically taking this concept on. Feedback from staff has been overwhelmingly positive, giving them a real chance to be as creative as they want to be with the person they are supporting.

It is a simple idea, but has taken time and hard work to get to this stage, so why not learn from us some of the lessons we have already learnt ourselves? This is another of my passions. When I went to work (an interim six-month contract, and that was over three years ago) at Sense, it was an idea that many others were also passionate about. So it was great to find a group of like-minded people committed to the hard work that was needed to get so far.

Feedback from families and other professionals has been great, but most importantly, the people we support are in favour, really engaged and involved. I think sometimes we underestimate people’s ability to grow, develop and change. Some of the most valuable life lessons I have learned have come from the people I have supported over the years, and their resilience leaves me feeling humbled.

You can tell from this that these issues are dear to my heart, and I would like to share them with others.

Anne Lawn

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