Professionals of my vintage – my career started in the Beatles’ era – have lived and worked through some revolutionary changes in the lives of people with learning disabilities. We have gone a long way towards the abolition of isolated and isolating ‘institutional’ provision. We are all person centred. We protect peoples’ rights and safeguard them. We ensure that they have a voice in their own affairs and in the nature of services provided to them. We are in the process of enabling them to self-direct and organise their own support arrangements. We are all committed to the their entitlement to pursue ordinary lives.
I wonder if you, dear reader, are responding to the previous paragraph as I am? “Yes, but” and “You’re joking” are my immediate responses to all of these statements and I know that I could rewrite them in a more qualified way with greater honesty. However, our professional and cultural tendency is to pretend to ‘evidence based practice’ while rationalising and ostracising perspectives that threaten our principled equilibrium. And I guess that is a posh way of saying that we live in a politically correct culture of mutual self-deception. Hence this polemic.
We have shut the large majority of the old mental handicap hospitals and many charities have dispersed their previous campus services but we continue to contain growing numbers of “people with complex and challenging needs” in isolated and isolating specialist services at enormous cost and expose them to allegedly therapeutic regimes that never seem to enable their reintroduction to ‘ordinary life’. I wonder whether if this is not an inevitable consequence of guaranteeing a role for the medical model in the horse-trading that was required to secure the hospital closures? Alternatively you may choose to adopt a pragmatic stance based upon the belief that there will always be a significant population of folk with irremediable behavioural difficulties. That, however, is not my experience and I know lots of people who now pursue pretty socialised and contributing lives who were previously perceived as ‘the spawn of the devil’. So I tend to the view that it is all too easy to blame the victim for our own inabilities. It is a truism of problem-solving that, “if you always do what you’ve always done, you’ll always get what you always got”. If you buy a brand of car that proves to be unreliable it is likely that you’ll buy a different make in future. After all, the breakdowns affect you. You would get very upset if the supplier blamed your driving!
I’m just getting to know Adam. He’s due to leave school and in his time in specialist and expert settings has acquired a very challenging reputation, two to one staffing, and a frightening prognosis. Everything in his life seems to be focused upon containment and, of course, he kicks against this. His relationship network is already diminished to a couple of close family carers and folk who are paid to be with him. We will be working to change this.
Are we all person centred? Frankly, we seem to be increasingly service and cost centred. Person-centred, for me, starts with supporting the focus person to really explore what is important in their lives and essential for their happiness. There are lots of great tools available to help folk do this but they are not used very widely. Professionals whose core roles are concerned resource gate keeping and management frequently use ‘sanitized’ versions, with their iconic names retained. According to the Welsh Assembly website people should have a person centred assessment and the necessary proforma is provided. Their milieu is services and services are commodities. We no longer do social (let alone community) work – an activity. Instead we deliver social care – a commodity. Work focused upon assisting people to be more effectively in charge of their own affairs is ‘preventative’ and by definition low on the eligibility criteria. The services ‘prescribed’ for people who meet the substantial or critical bandings seem, all too often, to replace and disconnect natural family or community supports, often irrevocably. Since the Thatcher/Griffith’s consumerist revolution an urban myth has gained credence. It asserts that what disabled people need, in order to have a decent life, is protection and safe services. People with learning disabilities have bought into this in no small way and self-advocacy organisations ape trades unions in their demands for legislation and services.
Have you noticed that, when we ask people about the lives they want instead of demanding a litany of their dysfunctions and needs in order that they become eligible for our time and the resources we control, they almost invariably want the same things we value?
- Love, friendship, intimacy, companionship, belonging
- To be “comfortably off” – with the choices endowed by economic stability
- To earn citizenship, to enjoy the same rights and responsibilities, and experience the respect of others through the contributions they make to community life
- To have their own home, where they can be themselves – that is not other peoples’ workplace
- To experience the safety and security that derives from the four preceding wants.
On the latter point – bearing in mind the persistent professional liturgies of ‘reflective’ and ‘evidence-based’ practice – I find it unsettling that our policy formulators and legislators compulsively knee-jerk to scandals and fail to recognise the obvious fact that, for all of us, our ‘social security’ depends upon the folk who love and care for us and, hence, look out for us. Over-dependence upon paid care – as repeated institutional exposés, the most recent being Orchard Hill and Cornwall, demonstrate – equates with exclusion and vulnerability. Attempts to reduce risk through regulation and systems seem directed at the symptoms rather than the causes of the malaise and founded upon very devaluing beliefs about both the nature of vulnerable people and ordinary citizens in our communities. It is even more worrying that peoples’ safety and security is being institutionalised under the banner of ‘safeguarding’ – an orthodoxy that is, in practice in our risk-fearful society, synonymous with exclusion.
I have little doubt that there will be those who will defend the advance of regulation and centralisation as evidence of a listening bureaucracy. Self-Advocacy and umbrella groups have been campaigning on these issues for many years. However, it should come as no surprise that this would be welcomed by those who instinctively and single-mindedly see the solutions to all things as residing in greater statutory and professional control. Over the years I have been involved in a great many decision-making exercises in which disabled people and their families are alleged to have an influential voice. Quite recently I was involved supporting folk affected by a re-tendering exercise to participate in the appointment of Provider organisations that were to have a profound impact upon their lives. A lot of time and money was expended on the process yet the recommendations of both the disabled peoples’ and families’ panels were over-ruled by the procurers, unabashedly on the grounds of price. Why the more ‘expensive’ candidates were short-listed in the first place also begs questions about the ethics of the commissioning process. Anecdotally, and in my personal experience, we seem to have institutionalised the ‘Users’ Voice’ into a procedure where the box can be ticked as long as we can demonstrate ‘consultation’. And most of us know it but get on with the work!
“OK”, you say, “we lost our way, what with the Griffith’s ‘reforms’ and our pre-occupations with control and terror in the face of the risks of real life. But ‘personalisation’ will change everything. Self-Direction and Individual/Personal Budgets signify a fundamental transfer of power. He who pays the piper pays the tune.” And I will reply that, while I am convinced that the individualisation of resources has massive potential, a fundamental change in our attitudes and beliefs about people with learning disabilities is necessary if folk are to fully benefit and the walls of the cultural institution that surround them are to come tumbling down.
Far from being person centred the environment that corrals people with intellectual disabilities is service centric; of commodities and consumers, supply and demand, eligibility and money (not resources!), and, like so many manufactured economies, utterly irrational. And, bolstered by organisational systems and cultures plus the career and security aspirations of so many, it is built with subliminal bricks of far greater resilience than the baked and glazed clay of Calderstones or Borocourt.
The drivers for the physical deinstitutionalisation that we’ve yet to complete – given that obligatory group living is the norm for so many – were philosophical and perhaps best encapsulated by the term “an ordinary life”. If, as outlined earlier, we follow PLAN’s lead (www.plan.ca), and ask people about their ‘good life’ rather than what services they need, I believe that we arrive at a point where, instead of majoring on services for a vulnerable group, we have to think about:
- Seeking to ensure that folk have sufficient loving and caring relationships in their lives – addressing the isolation and loneliness that characterises the lives of so many
- Breaking the linkages between benefits and service entitlements and poverty
- Remembering the lessons of social role valorisation and putting contribution and participating citizenship at the centre of our activities
- Having a social housing policy that doesn’t treat disabled people like lifelong students
- Ensuring that the services we supply demonstrably supplement and enhance ordinary life
- And actively nurturing and engaging with the extensive resources implicit in families and the wider society – rehabilitating community work and freeing social innovation from the stranglehold of statutory controls and its unnatural and counter-productive preoccupations with systems and managerialism.
If we are to continue the evolutionary, two steps forward and one step back, progress of the last 40 years, we depend upon leaders and groundbreakers who, as a result of experience, communicate a passion founded in belief in the immense potential too often suppressed in people with learning disabilities and within their geographical and personal communities. Concurrently it seems to me that progress depends upon a political leadership that has true business expertise and understands that success derives from encouraging and resourcing diversity and experimentation, and that ‘loose’ is the necessary balance for ‘tight’.
Our prevailing preoccupation with services and concomitant neglect of societal resources derives, as I see it, from a persistent and incredibly deep-set prejudice. Despite all of our liberal rhetoric, people with learning disabilities continue to be defined by their needs rather than their humanity and, if they pass the eligibility criteria, accommodated in institutions of our minds.
Bob Rhodes