People with a learning disability

Stephen Roberts 18/09/18 Dignity Champions forum

hi, I work for a provider of support to people with a learning disability and am keen to network with people with a learning disability, their families and others professionals to discuss what dignity means to them and share examples of good practise, look forward to hearing from you


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Natalie Sayers 12/10/18

I work in social Care for adults over 65. However, my brother has sever autism and epilepsy. My brother is an ambassador for the charity he lives with. He recently wrote a poem about what diversity means to him.

Dignity to me as a professional and as his only living relative, means, simply being supported to live a meaningful life, in the way he wants, while being treated how anyone else would want to be treated.

For me dignity is the core of most other important subjects. For example, diversity. You have to treat people with dignity before you can aknowledge and respect their individuality.

On a personal note. My biggest hate is when people say my brother can't. We heard it from childhood and I never understood why. Why can't he? Why can't we help him to do what he wants? We always find a way. He now works full time, lives semi independently, does his own shopping and cooking. So he can!

I also despise when people talk to him like a child. He's a man. I know he hates it. While he doesn't say so, I can tell. Of course some subjects are completely lost to him. He just doesn't understand, but we never use childish ways to explain things.

I think it is great your trying to get feedback. You obviously care. If I can help in any way please do ask

Stephen Roberts 15/10/18

thanks Natalie, its great to get a thread going that is about learning disabilities and autism specifically. In Sense, when we discuss what dignity means to us similar themes come up; having a meaningful life, being treated the same as others who are not affected by disability, Steve

Helen Dunn 16/10/18

A great poem. I am a manager of a residential service and I would love to share the poem with my team if that is OK Natalie? I think its very thought provoking and highlights how having a team with a 'can do' attitude can really empower the people we support and removes limitations on what they want to achieve. Thank you for sharing it.

Natalie Sayers 16/10/18

He would love you to Helen. The more people he can help the happier he is.

I'm so proud he gets a voice and he isn't afraid to use it! We hope your team finds it helpful

Jayne Rudge 31/10/18

Hi Natalie,
I work for a charity who support people with learning disabilities. I love this poem and shared it with my colleagues. Would it be ok for us to use it as part of our Equality Strategy? It is thought provoking and perfectly sums up what we try to achieve as an organisation.
Kind regards

Natalie Sayers 08/11/18

Absolutely Jayne, I'm so proud he can produce something that can help inspire others. More importantly, he is proud of himself.

I do apologise for such a delayed reply

mike stone 13/11/18

Re: Natalie Sayers 16/10/18

Hi Natalie - I think your 'I'm so proud he gets a voice and he isn't afraid to use it!' is hugely important.

Unless EVERYONE gets across 'from my position, it goes like ...' then, to use a phrase, 'behaviour is 'not balanced' because of those 'excluded voices''.

In a different context, I have written about this:

It quickly gets 'all MCA nerdy' but the way I started my piece, is 'on topic':

I wasn't sure what to call this piece - it is about the e-mails I sent last week, but when it struck me that they all had something in common (all of my e-mails pointed to pieces I've written online) then I had a title.

I think there is a need for more service users and other laymen, to 'get their positions online', where the world can read them. You also need to be able to point at your pieces - which amounts to 'you need to get a piece published with a web-link that you can use to point people at it'.

Natalie Sayers 13/11/18

Mike I love your MCA nerdy posts!

I've been on so many training days for MCA but I learn more from your posts. They always make me think and now I question while on these training days.

It seems to me that they like to turn a blind eye to the great craters within the law and misconceptions surrounding mental capacity.

mike stone 14/11/18

Thanks Natalie!

Stephen Roberts 15/11/18

hi, not directly related but of interest. We are working with some people who have what is labelled 'challenging behaviour'. Personally I don't like the term, would rather say what the underlying unmet need is. Point I want to discuss here is the people we support do not have any sense of ownership over this label or even use the label. its something that has been imposed on them, welcome a discussion on this, Steve

mike stone 15/11/18

Hi Stephen, labels are problematic for various reasons. The one you've highlighted - 'ownership' - seems to be an issue with 'frailty' which is a label used by geriatricians [with various specialist meanings] but, apparently, disliked by many elderly people themselves.

One of the other problems with labels, is something I've already written about on this website - labels can create barriers to clear communication and discussion:

I came across a tweet just after I'd read your comment:

Neil Chadborn's tweet, while not necessarily 100% on the 'label' theme, does include your 'perspective issue':

'From talking to many different practitioners there are many different practices that are called CGA- some just assessment, some not involving a team, etc Can we take person’s perspective? ‘Test’ for: Holistic care plan & continuity of care?'

If I recall correctly, CGA stands for Comprehensive Geriatric Assessment (very loosely - it 'measures the degree of frailty' among other things, as I understand it [frailty isn't my main area of interest - but I've read a bit about it]).

Natalie Sayers 15/11/18

Stephen you raise a good point. In my work place we are currently looking at the terminology in this area.

OPMH have always requested we keep behaviour management charts. Which are very helpful to notice patterns and such. However, the term behaviour chart just seems so demeaning. We are helping adults, yet I think of a toddler when asked about behaviour charts. It is not right.

I also dislike the term challenging behaviour. In my experience challenging behaviour is also down to interpretation of the person providing care. What one person deems as challenging, another may not.

I do not have answers yet, but finding alternative terminology is on my to do list. So I will be interested to see what is said here and if I find anything I will certainly share

Stephen Roberts 19/11/18

Hi Natalie

Thanks for your comments, let keep this discussion threat alive as I’m sure its relevant & of interest to many people.

Our current positive behaviour support training (MAYBO) replaces CB with ‘ emotional & anxious behaviours’. This is a step in the right direction but, to me not ideal as we all have ‘emotional & anxious behaviours’ (not having any would be a problem !) & these ‘emotional & anxious behaviours’ are not necessarily a problem

We all also have the right to be angry & to express it in ways that are at times not ideal

Thanks my rant for the day ;-)


Operations Manager, South
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Simon Shorten 10/01/19

Hi Stephen
I am Deputy Manager of a small residential home for Adults with learning Disabilities
and i would also appreciate bouncing thoughts and ideas with others on best practice and how to promote dignity for those we care for.
Simon Shorten

Stephen Roberts 14/01/19

hi Simon, we are trying to set up so local learning disability networks, what areas are you based in ?

Simon Shorten 14/01/19

Hi Stephen I'm in Bury St Edmunds , Suffolk, but not come across anyone else locally?