As various people have said down the years “the true measure of a society is how well it treats its weakest members”. Setting aside for a moment the question of what we mean by ‘weakest’ in this context, by this yardstick what does our treatment of people with learning disabilities suggest about how we measure up? What if we extend that to people with learning disabilities who have trouble making some or all the important decisions in their lives?
Take the example of Direct Payments, a key plank in successive Governments’ drives to place control over care and support in the hands of those people who rely on it to lead the lives they want to live. I’ve lived and worked through 30 years of painfully slow reform where the good intentions of Valuing People and the Mental Capacity Act have become mired in the seemingly intractable problems of implementation – as the House of Lords so rightly pointed out in their recent review of the MCA. Too few people see the benefits of these policies and legislation in their day-to-day lives and too often it is the people with the smallest voice (or no voice at all) who lose out. Depressingly , the root cause is usually money, or the lack of it, although that is not always the case.
What is the history of all this? For anyone new to the learning disability field, the metaphorical as well as the actual landscape of the 1980s would be unrecognisable; huge institutions, often former stately homes or workhouse seamlessly transformed into ‘long-stay hospitals’, dotted the countryside, the largest housing thousands of ‘the mentally handicapped’. Various scandals set in motion the steady decline of the large institution, although the cost of maintaining them and the savings promised by alternative forms of community-based support were the factors that ultimately sealed the fate of the hospitals. Hostels, residential groups homes and supported living arrangements emerged as alternatives, but relatively few former hospital residents went on to have their own tenancy, manage their own finances or arrange their day-to-day support.
At the same time younger people with learning disabilities and their families began demanding a more aspirational approach to their support; one based less on filling time and providing carers with respite, and based more on future careers and preferred lifestyles. Person-centred planning became something of a vogue during the early years of the new millennium, spawning many great ideas about what good support looks like. The sticking point for many however, was turning plans into reality when so much relied upon the attitude of the funding authority and whatever services were available locally.
The Independent Living Fund and Direct Payments offered more control and flexibility in the delivery of support, but despite having been available for some years, take-up remained stubbornly low despite studies that showed the really good outcomes that people can achieve using ILF and Direct Payments. In recent years take-up has accelerated although the picture is somewhat confused by the introduction of Personal Budgets which, in its different manifestations, affords people who have them more or less control depending on where they live.
Direct Payments are not for everyone, but I know from the work I’ve done in the past 15 years that they do offer a good way forward for many people who want to live active lives in their local community. But what of people who are less able to manage their own lives? Until 2009 anyone unable to consent to receive a Direct Payment was unable to take advantage of this option. Councils now have a duty to consider making a direct payment to people who lack capacity, where a ‘suitable person’ can be identified who will manage it on their behalf. This is sometimes called an ‘indirect payment’. This is an important development because it allows some of the most vulnerable groups in society to have the same opportunity to arrange support tailored to their own needs and reduce the reliance on ‘one size fits all’ services.
It needs to be widely publicised, not least to social workers, so please take a look at the new online guide (it is also available as an app for smartphones and tablets) and pass it on to anyone who you think can use it. Perhaps then we can start thinking again about how we measure up as a society.
thecommunityconnector 