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Asking what people thought
As part of our preparation for the review of the Same As You we went out to speak to over 150 people with learning disabilities from all over Scotland. This was not a representative sample as we did not control for different aspects but it did give us a wide range of comments from people on what they thought about the changes in their lives and how they looked forward to the future. We have put some of the quotes that people gave us at in boxes at different points.
Where people lived.
Many people’s lives had changed over the last ten years. Many had moved on to supported accommodation. There were more people living on their own than had been and many had moved on from living with parents or in care home.
There was a large group who still lived at home with their parents and had been doing so ten years ago. This group of people were very happy with this situation and while some had thought about moving on, neither they nor their parents were in a hurry to do this.
Living in Supported Accommodation.
We asked the people living in supported accommodation more about what they did during the day and in the evenings.
We wanted to understand how this support had shaped their lives.
People had a range of activities that they did both during the day and in their spare time.
Only a small part of the group indicated that they were unhappy with what they did during the day. Most of these people were resident in Glasgow and had recently lost access to day services as part of the review of services there. There was some indication from staff that this was being addressed.
Overall the people indicated that were happy with what they did and were happy with the choices in their lives.
We asked this group what they could change if they could only change one thing in their life.
• About half of the people would have changed as aspect of their support or living circumstances, to get more help to manage on less support or to live on their own.
• Just under a third would have been more part of their communities by having a job or having more friends.
• And a small group would have liked to transform their lives by having a partner.
We also asked people what was their biggest worry
• The death of someone close to them, mainly parents or other family members came highest
• Next was the support they needed to live
• A significant group of people indicated that they weren’t really worried about anything.
What did people tell us had changed for them.
In 2000 the Scottish Government published the Same As You, this was a pioneering approach to put the support and help given to people with learning disabilities into a national strategy that would pick up from the piece meal approach that had characterised earlier periods. The plan involved lots of people especially those who use services and their carers, at different points in the journey
This new strategy was to begin a journey to make sure that all citizens who had a learning disability would have the opportunity to make the most of their lives. Being part of a real community was going to be important. The strategy mixed long overdue reforms such as making sure that no one lived in hospital with new initiatives such as Local Area Coordination to help people take up community opportunities.
Iain Gray, then minister for , said in the introduction,
“We want and need to make the lives of people with learning disabilities better. Over time that will need more resources but now we can make better use of the considerable funds that are available in all sectors. The review gives agencies very clear signals about the level of change needed. People with learning disabilities and their carers must see early evidence of that beginning to take shape.”
It would be a shared journey. There were things that people didn’t agree with or thought could have done with more emphasis but what was there was more than good enough. It offered the possibility of the start of a real transformation in people’s lives.
The position we find ourselves in now has undoubtedly changed. Many of the changes have been for the better but many things have stayed the same and there are worrying signs that things will get worse again in the coming years.
What has led to this is that many of the main drivers of social changes have taken place outwith the control of the Scottish Government and these changes have been mediated through the hands of 32 local authorities and 14 health boards. Even the actions of the Westminster Government have had a major effect. With these 48 different groups having different priorities and going in different directions, The Same As You was less a description or a map of the journey but something that could be used to measure what was actually happening.
The Westminster Government created one of the biggest financial drivers of change with the introduction of Transitional Housing Benefit which eventually transformed into Supporting People. This was originally designed by the UK Government as a temporary measure to rationalise how support for vulnerable adults in rented accommodation was paid for. Due to the rules that it was established with, it quickly became a generous source of funding for new and varied types of supported accommodation. Overall payments went up from £80 million in 2001 to £400 million in 2004 and have stayed at that level since. A significant proportion (£127 million) went towards support services for people with learning disabilities.
This is nearly 8 times as large as the “Change Fund” of £16 million put up by the Scottish Government to support the Same As You Strategy. As a result the Supporting People policy initiative had a tremendous influence on the development of learning disability services in Scotland.
Given the speed required to attract funding, relatively little attention was paid to the overall design of services and where and how long term support would be delivered. This attention would be addressed later with the question about how Supporting People would be redistributed. Despite Supporting People being paid to support individuals, a new redistribution of funds was agreed where local authorities received fund proportional to their normal funding formula.
The interests of the different Health Boards also had a major influence. The number of people with learning disabilities in long stay hospital at the end of 2000 was 2,200 and by the end of 2011 was just over 300. This success masked the continuing long term interest of some Health Boards in the maintenance of long stay services. While the amount of money transferred by NHS to local authorities increased steadily, the amount spent by Health Boards remained stubbornly high falling by only 10% over the last 12 years and still remains in excess of £100 million per year.
As a result some of those 300 people had been in hospital for over 15 years. Of those Health Boards accept should not be in Continuing Health Care, over 46% have been in hospital for longer than 10 years. Each Health Board has a different approach and in some there is little attention paid to why these people are still there. No longer is there an argument that there needed to be medical attention for their care, instead the issues about the management of challenging and offending behaviours are used to justify the continuing incarceration. Little is said about the quality of care and what prognosis there could be for the eventual release of people into the community. None of these people had been placed in hospital as the result of a court order that justified their continual detention.
Even each of the 32 different local authorities not only had their own plans for the Same As You, they had other policies which worked against it. We saw this clearly in the rise of competitive tendering for care service in the last 10 years. Despite the view in the Same As You for people to be able to exert choice and control over their services, local authorities concern for “Best Value” began to encroach on how support and services would be delivered.
Several local authorities successfully tendered the provision of support for people with learning disabilities, transferring the provision of support from voluntary organisations to a mixture of private and other voluntary sector providers. In some cases, it was a case of musical chairs with some providers losing services while gaining others.
In Edinburgh, people with learning disabilities eventually said enough is enough and forced the council to drop its plans to tender services. They said that the personal relationships that they had with the organisations and staff that provided their support could not be quantified into a tender document and put out for bids. Eventually the council agreed.
In this context, everyone assesses The Same As You to see how much that has been changed is in line with what we wanted twelve years ago. No one really thinks that it is the Same As You that has driven the change. Nonetheless, with so many different groups pulling the national policy in different directions, it is testament to the strong principles that it was built on that we have gotten as far as we have.
If a policy is about moving us forward in an agreed way, then this experience should teach us the need for a strong centre to promote the adoption of the policy.
We think the Scottish Government, itself should play such a strong role. But it may be unlikely that the Scottish Government would wish play that role, even though they would be good candidates for this and have the skills and experience to do this. Given the many political ambitions of the current government, they are unlikely to break the long tradition public authorities in Scotland have of a shared approach. In this model, the Scottish Government is less the boss and more the co-worker of other public bodies. Its recommendations are listened to but ultimately they may carry no more weight than others.
In this situation we think that a Development Agency for Learning Disability closely tied to the Scottish Government could play an important role in promoting national policy. Such a body could
• work with public, private and voluntary partners to decide upon good practice
• formulate detailed development plans following the Review of the Same As You
• take further steps to harmonise the competing interests of public bodies in Scotland.
• Bring together local authorities and health boards to develop coherent policies to tackle shared issues and establish common policy and priorities
• Hold public, voluntary and private bodies to account.
Such an organisation could also develop a coherent response to the challenges and opportunities that will undoubtedly continue to arise in a small country with 47 or 48 major organisations concerned with people with learning disabilities.
The Scottish Consortium for Learning Disability was set up as a result of the Same As You and has received significant public funding as a result. Its first aim was to be a centre of excellence and that has now moved on from that. Now would be the time to look at its future role and how such an organisation could support the Same As You review. SCLD is an independent body that can make its own decisions and may have alternative plans but there would be merit in discussing with the organisation this type of role.
SCLD currently receives funding from the Scottish Government on a renewable basis subject to public tender. The renewal of this contract would be the right time to consider the best use of this funding. If SCLD did not wish to develop in this direction, then the funding could be used to create such a new style of organisation.
For more information about the work of the Learning Disability Alliance Scotland, to get a copy of our latest newsletter or for anything else you can contact us at
LEARNING DISABILITY ALLIANCE SCOTLAND
Tel 079 201 418 23
"Now I take Megan to a church hall, where for £5 we can sit from 11 to 3. For lunch she gets a sliced ham and white bread sandwich and a chocolate biscuit but at least its warm and dry. There’s pens and colouring books to keep her occupied.” That’s the words of one Glasgow mother describing the support she had for her daughter after her day centre for people with learning disabilities was closed down.
It’s the type of story that’s not often heard. Instead we hear how “modernisation” will close day centres but replace them with a better service.
Over the next few months, Glasgow City Council is going to close three of its seven centres, Hinshaw Street, Berryknowes and Summerston, for people with learning disabilities with 320 people being moved on to “alternative day services”.
One of the arguments used to justify closure is that current users have never been properly assessed. The council has said “If [attendees at day services] needs were being assessed for the first time today then in most cases service users would not be assessed as needing full time day centre services.”
But few users have been through the council’s personalisation assessment within the last 18 months, so its not clear what actual evidence the council have that this is true.
Instead many assume that this is a money driven decision. As we have argued elsewhere, the Council’s Resource Allocation System is so distorted that very few people can expect to receive a budget that is sufficient to buy their existing services, no matter what their level of need is.
Day centres remain popular for many people with learning disabilities with a range of needs. Existing day services are quite different from the traditional “isolated island” model.
•Many are now integrated with community leisure facilities.
•Others are linked to work opportunities where people enjoy a range of activities personalised to their needs and wishes.
•Other day centres don’t draw a line between community and centre activities but see them as linked in one continuum of engagement.
Part of the reason that people still value day centres is the sense of community, friendship and purpose that they gain.
Day centres have provided a base from which people can reach out. They help people with learning disabilities gain friends and the support of peers that they cannot always get in the family home.
More work needs to be done by Glasgow on how Alternative Day Opportunities are developing. Most such placements are for less than two days a week. It is not clear who inspects such services and whether these checks apply to all Alternative Day Opportunities. One day service user recently said the biggest problem with alternative day services was “Finding a dry, warm eating place at lunch, not just sitting in cars and shopping malls”.
Chanting “Modernisation Good, Current Services Bad” wouldn’t by acceptable on “Animal Farm”. It shouldn’t be acceptable in Scottish Social Work.
Self-directed support is supposed to extend choice for people. By closing down a valued service, choice is taken from people to access a service that they think is best. Personalisation can also be about choosing to retain an existing service. This is a legitimate choice and should be supported