Guest Blog from Doreen Kelly, Director of Beyond Limits an organisation based in South West England that has piloted a tailored approach using Individual Health Budgets in the form of an Individual Service Fund that ensures a truly person centred approach to support.
Our tailored approach at Beyond Limits grew out of Partners For Inclusion, an organisation that I set up in Scotland in 2000, with the intention of changing the face of services for good. In Scotland we noticed that services were often mediocre and only just good enough - they still had not put the focus on the individual. We wanted to do something different, to provide support that wasn’t just okay. Instead we got to know the person really well and understood what worked and didn’t work in their life.
It sounds simple doesn’t it? But when we started doing this we found that most people were considered to be difficult or complex because they didn’t fit with the system and processes. But what they needed wasn’t really that complex, it just needed a change of mind set – a more human approach.
Because of the success of our work in Scotland we were asked to do some work in Plymouth so we decided to set up a separate organisation, Beyond Limits, to meet this need. One of our main focusses was to bring people back home instead of their out of area places, so that they could be closer to their family or friends and supported to build fulfilling lives.
And then Winterbourne View hit the headlines and people really started to understand the problem. In England we were noticing a trend, put simply, there was a lack of sophisticated support. In the original hospital closures over 2 decades ago People moved from large institutions to small institutions – but they were still institutions. On the occasions where placements broke down people would be offered ‘specialist placements’. This specialist care was often provided by what are basically private hospitals which could be hundreds of miles from the persons home, family and community leading to isolation and often despair
The answer should be Transforming Care, and our approach shows that it is possible to offer person centred support – so why aren’t more people given the choice over their care and support?
In my view, there is still an in-built discrimination in services.
For example, look at the assumptions that are often made about how people might choose to live. If I was looking for an activity or housing, it would seem odd if what I was offered was based on placing me with other wee Scottish people rather than suggestions based on my interests and things that are important to me. Yet, this is what happens with people who need complex care and support all of the time. The knee jerk reaction is “where can we place them”, or “who can they share with” the reality is very few people, if given a real say, choose to share with anyone. This makes sense to me, if I had lived with even my best friends over the years, I am pretty sure we would no longer be best friends. This leads me to wonder how someone who has a need for a particular routine, habit or environment can cope sharing with others who may themselves have their own needs in this respect. A more sensible approach would be for us professionals to understand the principle of ordinary homes for ordinary people, not placements into which people need to fit. This approach can create challenging behaviour.
Good person centred care means that we can’t forget to ask people what’s important to them. This is about their right to choose. Our work shows us that most people want the care and support in more ordinary settings and not always in places that are designed for people with labels. Top tip: Labels are for jars not for people!
The support we offer is bespoke to the nth degree (we don’t just talk the language of bespoke, we walk the walk) – putting the person and their choices at the centre of all that we do and we listen to their families too, meaning that they have dedicated and matched support staff based on what is important to them as a human being. It’s important to ask those kind of questions. If you start off by providing support based on “what’s your disability?” then you’ve already got it wrong. Planning on deficits results in deficient planning and dead end lives devoid of hopes, dreams and ambition.
Another lesson we learnt early on is how difficult it can be to get traditional care systems to be flexible. Our service is responsive to the person’s immediate needs – because that person’s funding is ring fenced just for them we can react quickly in times of crisis to get them exactly what they need avoiding further crisis which can be costly in human and financial terms.
Getting to this point has involved building healthy and trusting working relationships amongst services as well as in families within the community. We’ve been fortunate to have some great leadership from our Commissioners as well as a commitment from other colleagues to work together to get the best result for people and their families. It’s needed us all to embrace a new way of thinking and believe in the positive culture of joint working.
In order to do this we have to remind ourselves that this is not system money, this is community money. The Transforming Care agenda needs to be about whole system change - changing hearts and minds and ridding systems of discrimination is going to take time. This is not an austerity issue, it’s a human rights issue.
For more examples of people living the life they choose read "When Hannah met Josh"