partnership is postponed until further notice

Another anonymous local authority, UK

For the first time since my arrival in the UK, it wasn't raining, and the town I was in looked great.  I can't tell you where the place was because I was attending a confidential meeting and it seems I am sworn to secrecy.  Such intrigue!  To be fair, it was arranged this way because of the desire that those present would be honest with each other about stuff.

The meeting was to provide an opportunity for the leaders of children's services and adult services to to spend time together as a first step to creating 'seamless' services so that there is a genuine 'whole life' approach to assisting people living with disability.  Great idea.  All too often we hear stories where a person living with disability hits 18 years old, and then everything changes as that person moves to a very different pattern of support (and the same is sometimes true when a person hits 65 years old).

So, great idea, but a couple of days out from the meeting, the adult services folk withdrew.  I haven't been able to find out why, but I can't imagine any pressing issue that would remove all of the adult service leaders from the event.  It is therefore a shame that their resolve was so easily dissipated.  Any notion of partnership was duly postponed, and the children's services folk had to meet by themselves.

What is perhaps more disappointing is that the meeting was planned apparently without regard for the perspective of people living with disability, given they have the biggest stake in all this.  It seems counter-intuitive to plan for a whole-life approach to supporting people living with disability if you don't actually involve them in its design.

So that's our reminder in all this.  Any decent system design for people living with disability needs to involve those same people in its design.  This is called co-design, and was an absolutely critical element in the success of the mental health reforms I was involved with in Wellington NZ.  Co-design emphasises the expertise that people bring because of their lived experience, and helps ensure that the resulting service design feels relevant and tailored.  

Unfortunately, the folk at this meeting spent a substantial part of the morning naming the various roadblocks and concerns and safety issues that might get in the way of the journey towards personalised supports via individualised funding.  A very long list was generated, and there was a sense of heaviness.

It was only at the very end of this all-morning meeting that the meeting began to think beyond such issues towards the possibilities in people's lives. I say this not as a criticism of those present, because I am confident they genuinely want to support people to get a fair go at life, but more as an observation of how public services train their staff to think. 

And I can't help but wonder if the morning might have had better balance had there been people living with disability in the room.  The stories of lived experience should always pull rank over the imperatives of bureaucracy.