A speech by Liam Byrne to the Learning Disability Today conference on 23 November 2005.
Thank you for that introduction. It is a great privilege to be able to speak with you this afternoon, and Mr Brindle. I'd like to speak from the head and from the heart a little about some of the stories of social care and what needs to change that I have heard as I have criss-crossed our country these last few months to Birmingham, Gateshead, Hartlepool, Liverpool, Manchester, Oldham, Stoke, Sheffield and across our capital.
One sunny Monday morning a few weeks ago our challenge became clear to me on a visit in my home town of Birmingham. I met an inspiring man called Kevin, who had just been given the chance to set up home independently. Lots of attempts had been made at resettling Kevin in the community before, but these all failed. But thanks to an extremely innovative supported living outreach team operating in Birmingham, that brought together people from the NHS, the local authority and the voluntary sector, Kevin has now moved into his own flat.
From needing 24-hour supervision and support, Kevin now only needs support during the day, and has settled well into his local community. Not only was he happy, he was trying courses at college and starting to experiment with getting a job. And when I asked him what the one difference was between his new life and his old life on a ward, he said quite simply that it was the chance to enjoy his own peace and quiet. In a single phrase he conjured up the noise and turbulence of the life he'd left behind.
Later that day I visited Sandwell Community Caring Trust, who offer a range of sheltered housing, and facilities for children needing respite care the local population, enabling people who had lived in long term hospitals to have their own homes. There were two children there, who had finally been given a warm and loving home and an environment where they had been given the chance to take control over their own lives for the first time. For the first time these residents were given the chance to make real decisions, such as how to decorate their rooms. And they had chosen to cover their rooms with West Bromwich Albion football scarves.
I'm afraid that like many politicians I have to confess to having read a bit of Machiavelli. Machiavelli was a philosopher who lived in Italy 600 years ago and he said something interesting. He said there is nothing so hard in this world as to seek to introduce a new order of things. Well he was absolutely right.
So here we have a situation where on the one hand we have people on the one hand desperate for a different life, the quiet miracle of a normal life you might say; and on the other, committed people working in the community with a vocation, a passion and commitment desperate to make a difference. But in the middle is the system. Both the people who need change and the people working in the community are frustrated - which tells us that we have to change the system.
Now I know what you're thinking. That sounds a 'like old hat'. Politicians have said this before, but the truth is that this is something different. The need for change has never been stronger.
Why because our health and social care system in England is at a turning point:
Now changing the way we do things will always carry risk. On Monday some friends of mine in Oldham called Moveable Feast put on a play for me, Phil Woolas, the local government minister, and some colleagues. Their play was about Guy and the story was about Guy's move from a place they called Serviceland - a land of no choice, little say and not a lot of hope. Guy's story began with a tragedy, with the death of his aunt. And at his aunt's funeral he met a someone who started to work with him as an advocate. His life then began to chance, this change started slowly. First, by going out with friends to a pub. Then he move into his own home. Then he began sharing this home with a carer. Then he acquired skills. Then he got a job - not in a charity shop but on a building site. But at each step of his journey, the molehills were made into mountains and had to be levelled.
Guy, they said: 'you'll never cope in your own home - you can't keep your own bedroom tidy...don't go to college you're much too vulnerable...don't get a job you'll lose your benefits, and what if we have to put everyone you work with through a police check'. So again molehills were made into mountains.
But having a learning disability didn't strip Guy of his ability to have dreams - and have dreams like anyone else.
So changing Guy's life meant taking risks. And yes of course risk have to be managed. But change is not reckless and our failure to change has a price: a price paid by many of you.
In September, we published the groundbreaking survey of adults with learning difficulties in England [3000 adults with learning difficulties were surveyed and there are 1.25 million people with learning disabilities in the England]. Its results show something clear: people with learning disabilities have been left out of improvements we've made to public services over the last 8 years.
This is a unique survey because it was written and carried out by people with learning disabilities.
Now we know that people with learning disabilities are more likely to face social exclusion than other people, and they are less likely to have control over their lives.
Social exclusion means that often people do not get the chance to be involved in the important things that make us all citizens.
Less than one in three people in the survey said that they voted in the 2001 general election compared to four out of five people of the general population.
Two out of three people who were surveyed in supported accommodation had no choice - either over who they lived with, or where they lived.
One in five women with learning disabilities undergo cervical smear tests compared to nearly four out of five in the general population (19% vs 77%). People with learning disabilities are less likely to receive regular health checks and have illness identified and acted upon. More than a third of people have a hearing loss. And I could give you example after example after example.
So how do we change? Our argument is the one started by my predecessor Stephen Ladyman and our agenda is clear:
Let me take each in turn.
At the centre of plans for personalised assistance are individualised budgets.
The concept behind individual budgets is, like most of the best ideas in life, a very simple one. The proposal is to bring together the different pots of money available to disabled people in the form of individual budgets, allocating money that is already there differently, delivering services in ways that are personalised to what people need. To give disabled people choice over how those needs are met.
There are many different sources of funding and support for disabled people: helping people to live in the setting of their choice, providing housing adaptations; or support to help disabled people enter or maintain employment. Individualised budgets are a joint piece of work between Government departments. We have agreed between us to put together a number of different pots of money that support disabled people and to see if we can work out a good way of delivering this support so that puts the disabled person much more in control of their own destiny.
We have a lot of detailed, difficult work to do to turn the big idea into workable reality. But the response from local authorities wanting to pilot the individual budgets approach has been fantastic.
And when you hear of the changes that are possible, its not hard to understand why. Individual budgets are not a totally new idea. We have been drawing heavily on the work done by the In Control programme and the DH Valuing People project team. This project was very influential on the thinking behind the Life Chances for disabled people report and Independence, Well-being and Choice. I want to pay tribute to Mencap for their work in the In Control projects with my department's Valuing People Support Team. Some of you may even have been involved in this work.
Let me just tell you about one man who'd life was changed by individual budgets. A young man with very limited communication capacity who had been placed in a residential college some distance from his home was making it increasingly clear that he was unhappy with this placement. Because he lacked speech with which to communicate his unhappiness, his frustration tended to boil over into so-called 'challenging behaviour'. It was becoming increasingly clear that his placement (which cost many thousands of pounds a year) would soon break down. Local social workers would then be faced with the difficult task of finding him somewhere else to stay.
The In Control project was already operating. The young man and his family were introduced to the idea behind it and after discussing the level of funding they could expect to have, they were able to develop a scenario in which he moved back to the family home and was supported by somebody he knew well and trusted. In this case, it happened to be an aunt. The flexibility of In Control allowed the aunt to be properly paid for carrying out this support work and to give up her previous job.
Just a few months down the line, the young man is clearly enjoying life. He is back in the family home with his pets and other home comforts. His parents, who were never happy about him living away from home, but simply did not feel they could cope with him without support, are also much happier. They are delighted with how settled he seems and are beginning to pick up their own life together after so many years of having to put their own needs on hold in order to support their son. So let's be clear: personalised caer can make a world of difference.
Second, we need assistance that is connected and simple to access. I have heard too many stories which will be all to familiar to most of you, of the marathons people have to run to get the services they need. We floated the idea of care brokers in our Green Paper - the responses said it was an interesting idea but needed more detail. We will review that feedback before we complete our White Paper on health and assistance.
Third, there is a need for assistance that is high quality.
I am sure that you are aware of the concerns that have been raise following the ongoing investigation into significant failings of the Cornwall NHS Partnership Trust into the treatment and care of people with learning disabilities.
Yet again we see potentially vulnerable people in our society being easily overlooked.
This case has raised some very serious issues. Next year the Healthcare Commission is undertaking its first national audit next year of inpatient NHS and independent hospitals. The results will highlight hot spots where more work needs to be done to support services to raise standards and ensure quality care is being offered to all people being looked after by our NHS. This is just the start. In the future, a much greater emphasis will be placed on healthcare organisations by important regulators such as the healthcare commission. They must ensure quality services can be delivered for people with learning disabilities.
I know that this is an ambitious agenda. Its an agenda that will need strong support from the centre. And some of you may be thinking, that the Government should put its money where its mouth is. And so today I am pleased to announce that the Learning Disability Development Fund will be kept in its present form at least until March 2008. So £40 million will continue to be identified for learning disabilities. I know that this provides the grounding for us all to continue pushing forward with our approach to supporting people with learning disabilities to have more choice and more independence in their lives.
This is our agenda: a high quality personalised service, that is easy to access and that arrives on time. Britain has a bright future ahead and we have to ensure that there is a place for every single person to achieve their potential as part of this future.