About 10 years ago Bryony Beresford published a paper on the transition, the title of which started with “On the Road to Nowhere ?..” I can’t remember the full title and I can’t be bothered to go and look . But, it was one of those rare research articles that seemed to make a difference. Some might argue, that it simply captured the prevailing mood and that the prioritisation of the transition was already on its way. Its probably irrelevant which came first, but I like the idea that researchers listening to families can make a difference so I’m going to run with that.
In the last ten years the transition has seemed like a priority. It received funding as part of Aiming High and a Transition Support Programme was set up to pilot and roll out good practice. When the coalition came to power in 2010, much of the work that had been done was fed into the SEND Reform process and the idea of extending EHC Plans from 0-25 seemed to reflect a desire to radically transform families experiences of transition and beyond.
In the last couple of years ‘Preparing for Adulthood’ and Sanderson Associates in particular, have done some remarkable work developing processes to support young adults with learning difficulties in their Transition to Adulthood. In short the Road to Nowhere was being transformed; gone are systems that didn’t encourage practitioners to talk to each other and in came EHC Plans, Personal Centred Approaches and Personal Budgets.
Importantly all of this was taking place in a changing cultural context underpinned by the Mental Capacity Act . Which itself is based on the principle that a person who may lack capacity should be presumed to be able to make decisions unless it has been assessed that they lack the capacity to make the specific decision at the time that it needs to be made … or something like that . For me the MCA is both profoundly important and appalling. It is important because it empowers the voice of young adults with learning difficulties, it is appalling for another reason that I will come back to.
So in the context of this cultural change the pot-holed Road to Nowhere had been re-surfaced and transformed into a slick new highway, but the question is where was it heading? Because transitions and plans are all well and good, the key issue is where do we get to.
Well earlier this year ADASS (Association of Directors of Adult Social Services) President David Pearson said:
“This is the third year of continuing cash reductions and the fifth year of real terms reductions in spending. Since 2010 spending on social care has fallen by 12 per cent at a time when the number of those looking for support has increased by 14 per cent. This has forced departments to make savings of 26 per cent in their budgets – the equivalent of £3.53 billion over the last four years ”
The truth is that the road is heading for a social care desert. A desert that will impact on all of us differently but that has a number of key characteristics. Services to support families in the community are being decimated. The services and funding that is available is increasingly focusing on crisis management rather than the aspirations of young adult’s and where the infrastructure to support a young person in their community breaks down local authorities are turning to health funded assessment options as a solution.
For me it’s meant having to reconcile processes that seem to promise so much, with an everyday life that is characterised by uncertainty and struggle. Above all, the struggle to reconcile my son’s emerging adulthood and assertiveness with the profound complexity of his capacity. Everyday I am torn between fighting for his right to be – and fighting for his need to be protected. And in doing this, like so many parents of young learning disabled adults – I struggle with little support and without guidance as the cuts bite deeper and deeper.
But some things survive the cuts and I am often judged and assessed as I travel along this shiny new road of opportunity. And this is where the appalling aspect of the MCA comes into force – the power it gives practitioners to exclude me when I become inconvenient. Rather than recognising that families function and thrive in the context of the community that sustains them – too often legislation such as the MCA and the assessment processes that it supports are used to judge and marginalise the voice of parents and to blame them when things fall apart through lack of support.
As for us I still don’t know exactly where we are heading. I suspect that we will struggle on until we cannot cope or get it badly wrong. But what I do know, is that at the height of all this innovation and all these cuts – a family living near Oxford with a son not unlike my own, were not supported sufficiently to enable them to overcome the challenges of his assertiveness and adulthood. For them the shiny new road led to an assessment unit and a remarkable mother and an exceptional young man were torn apart by the challenges of transition and a system that disempowered them before it failed them.