Lighthouse introduction

Last week we held a study visit where we hosted folk from across Europe and from Canada.  We were joined by service providers, government officials, network builders. All are actively trying to support people with disabilities to get to live good lives. 

In setting the scene for three days of discussion, sharing and enquiry, I proposed three under-pinning focusses:  

1. “There is much more to life than services” 

LivesthroughFriends work with people with autism, disabilities, mental health challenges and those who typically have acquired the most complex reputations.  We are not, though, a service provider.  Our role is in designing and setting up support that enables these individuals to live their good life.

Whilst almost all those we get involved with do require some formal ‘care’ provision as part of their lives – at least initially – we believe those services should only ever be a part of the picture. 

“Services” cannot provide many of the things that actually make life worth living.  Relationships, a sense of purpose, love…  these are crucial for a good life, but they are outside what services alone can offer. 

In our Framework, we identify that services should be supplementary and complementary to what is freely available within communities and neighbourhoods – that is to say that services should only feature and get involved with the things that are not available elsewhere.

Unfortunately, we see too often that the response to those with complex lives and additional needs is too often ONLY to think about allocating a “service”. 

Moreover, we see that this focus on “services” swamps other inputs, drowns the potential elsewhere and often acts in a way that discourages other more natural inputs. 

Our mantra that ‘there is much more to life than services’ aims to intentionally set out to look beyond services, to seeing the assets, opportunities, and welcome within our communities.

Harnessing that, building connections and networks takes skill, effort, intention – it is a role that we believe service providers need to take on, benefitting from the expertise available from those like PLAN in Canada who were amongst the delegates at the event.  

There is a need for service provision – those able to support people day to day.  What we need are the right sort of providers, with the right values and the right structures and who focus on the right roles. 

• “I am human and I need to be loved.  Just like everybody else does.” 

The lyric from the band The Smiths in ‘How Soon Is Now’ (1985) is, to my mind, a fundamental statement of fact regarding every individual that we support.    

We hear people who are given so many labels in their lives – disabled, autistic, challenging…  the label that is less freely given is human. 

The failure to see individuals as human first leads at worst to the inhuman responses that too many people encounter.  In the UK, where we have made some strides in de-institutionalisation, we still have figures that suggest around 2000 people with autism are inappropriately held in secure hospitals here. 

Such institutionalisation (and the often abusive practice that happens within) is possible when you stop seeing people as human, and start to see them as other labels, as a collection of needs, as something to be managed, or contained, or serviced.     

The starting point for all our work at LivesthroughFriends is to get to know the individual we are asked to work with.  We want to get to know them.  We do this by getting alongside them, not with a clipboard and a questionnaire to complete, but with curiosity.  Building trust is something you do, not something you talk about. 

Many of those we meet are surrounded by staff teams who are there to control situations when traumatised folk become unregulated.   

What is really needed is support to better understand their bodies, how to control their reactions to situations and stimuli, and people around them who don’t add to the stress that is a feature of how they experience life.  Our partnership with Studio 3 is about introducing a low arousal approach into working with people in exactly this way.   

Our belief is that what the people we support really need is love.  Above all, most people want relationships, friends, to fit in, to feel safe with, to feel belonging.  Just like everybody else does. 

Our work everyday involves reminding those responsible for people with disabilities and other labels to always see the human being, to look to build on someone’s strengths, not just focus on the things they find more difficult; and not to dismiss this need for love and relationships as somehow a minor need.

• “There is another way!”

This is the unofficial 4 word vision statement for LivesthroughFriends.  It recognises that the current way that systems respond to people who present as the most complex, is not working. 

We are commissioned by local authorities to identify solutions for individuals when what they normally do – which is to find a service to put someone in – doesn’t work. 

We talk to many professionals in these local authorities who recognise that what they do does not work; that know that people often end up bouncing from placement to placement to placement; where the reason it breaks down is never addressed because they are too busy looking for ‘the next place’.

It is the system conditions that are bad, not (normally) the people who are working in it.  The system tries to apply the same responses to everyone, it doesn’t have time to deal in individuality, it seeks quick fixes to problems – because it is only interested in problems, it seemingly has no interest in people’s strengths or positive attributes. 

The system worries about public money and fair allocation of resources – it worries so much about this that it is happy to waste money on things that don’t work as long as everyone gets the same experience of failure.  We were fortunate to be joined at our event by Simon Pickthall from Vanguard who spoke about how systems get fixated on the wrong things and how flawed ways of thinking might be changed.

‘There is another way’ is our argument for being commissioned to get involved. There is.  We can be hopeful.  We can achieve better outcomes.

18mths ago someone we were engaged to work with was in a secure hospital, with a ratio of 7:1 staff around her. Those were not 7 people focussed on her wellbeing – they were the security guards, waiting for a challenging outburst, waiting to restrain her.  Today, this young woman lives in a bungalow in the same village as her mum.  She has a small staff team, 2 at a time when she is at home, a third is around when they go out and also spends time developing opportunities for her to build her social network.  The staff team have been busy recently helping her deal with the complexities of online dating, of learning that people do get upset when you have more than one boyfriend at the same time, with enrolling at college and maintaining her voluntary job.          

There is another way.  A better way.  A way that is about real lives and is far less expensive than 7:1 staffing in a secure hospital. 

But another way requires local authorities to act differently.  It requires a willingness to be creative rather than to blindly accept the rules. 

It needs a commitment to want to support individuals to be active citizens, not passive recipients of care.  It needs real leadership to go against the dominant system.   

LivesthroughFriends is a small social enterprise, but we are mighty.  

We are ambitious and determined, but our goal is to change system conditions, not to build a big organisation.

Rob Fountain, Chief Operating Officer