Can’t decide? You can still get a Direct Payment

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.

Connecting with gifts: Molly’s reflections from Turkey

Being in Turkey has woken up my inspirational spirit again; something I thought had gone missing. It wasn’t lost; it just needed a kick in the right area!

Teaching community connecting to others is always a challenge. There often is a fear by supporters and paid people that it is going to put them out of a job, a fear by relatives that people will get hurt emotionally and physically (by being let down by others or taken advantaged of), that the Community is not welcoming or ready to engage with people with disabilities. Yes these are the reasons why I continue to teach about connecting people because being a member of communities myself I see how it works.

In Turkey where we are teaching about person centred working and community connecting, I have had the privilege to observe connections happening between people with disabilities and community members in short periods of time with little to no effort needed by paid workers. It took the right place, time and opportunities to be with other people, and sharing gifts. That is all!

Ozge is a student living in Istanbul, a beautiful young woman who has experienced of institutional life. Now she is on the course to be a trainer, staying at the hotel with the other group of trainers. She has found a friend there in Fatma, the waitress in the dining area every morning and evening when our training group had their meals. Ozge connects with her eyes: she looks intently at you and then, if connecting with you, blinks and smiles this infectious smile that melts your heart, so all you want to do is to keep looking at her to see if she really means you. She does not do this to everyone, it is intentional and it means she wants to know what you are thinking. Every day Fatma spent time talking with Ozge during breakfast, and dinner. She even stayed later than her shift to keep talking with Ozge. Fatma is also a student, studying in Ankara when she is not a waitress. Both are on Facebook and whatsapp so they can exchange information, but better than that, Fatma is visiting Istanbul and Ozge has invited her to her home.

What did it take to connect Ozge with Fatma? There were the opportunities to meet at consistent times. Being with other people who value you so others know how to connect – her support worker Yelda knew when to support and when to back off and let Ozge do her own thing. Shared interests were introduced by just having informal chats. The gifts of a smile, eye contact, or the excitement over seeing someone each day which, as Fatma told me, brightens up their day. And, it was important for Ozge to be respected by someone like Fatma who is of a similar age.

Hulye is a very quiet soul. You recognise when you meet her that something bad has happened in her life. She recently moved from a very large institution where she spent 22 years of her 30 years into her own home with two friends. You can see from time to time a glimmer of hope that says “this time life might get better if I am careful”. Hulye spent a week with us training away from her home city. Every day she would sign in at the reception desk overseen by Emre from the organisation hosting the training. He also took photographs of the training and so was with us in the room throughout. We had done lots of drawing that Emre had dutifully captured and on the last day Hulye went to the desk and with a big smile on her face handed him a picture she had drawn herself. Emre asked if it was for him and she nodded. He asked about the picture with the house, the trees, the flowers, and the sun. She said it was where she lived now. Emre thanked her graciously, using her name, and later told the trainer how Hulye’s gesture had moved him to tears. He said he had never been given such a better gift in all the time he had serviced such events. He got Hulye’s address and said he would like to keep in contact, but whether he will or not is less important than the fact that this community member will not walk towards not away from people with disabilities in the future. That is his gift from Hulye.

These are just some of the people who have connected with me but also with others in a country where the social model of disability is a very new concept. Now they are getting it ‘live’ from people like Ozge and Hulye.