Expert Guides

Brief history

When the Valuing People white paper was published in 2001 it received an eager welcome as the first major strategy on learning difficulties for 30 years.

With the buzzwords of rights, independence, choice and inclusion, it promised to put Britain’s 1.4 million people with learning difficulties a much-needed voice in how they were cared for.

The paper, which covers policy for England, set out a ‘cradle to the grave’ vision with targets for local authorities including increasing the numbers of people taking up direct payments, moving people out of NHS long-stay hospitals into the community and modernising day services.

But while the ideals set out in the white paper are still seen as highly influential four years after they arrived, frustration remains at the uneven and slow progress in implementing change.

Rob Greig (pictured right), director of the Valuing People Support Team which monitors implementation says: “We cannot overcome centuries of discrimination against disabled people in four short years. Despite good progress, more action is needed to encourage the 'mainstream' of society and services to be fully inclusive of learning disabled people."

Critics cite a lack of accountability for local authorities and other agencies as the main factor in dampening the impact of Valuing People.

Greig says: “Put bluntly, too many people in public services see Valuing People as being ‘optional’- something they can get away with not doing.”

The Valuing People Support Team’s most recent progress report to the government this year found that a lack of accurate monitoring of local services and service users was hindering effective delivery of the strategy.

The report warned that councils needed greater incentives to prioritise learning disability service improvements such as more performance indicators.

Critics say one of the major obstacles in finding out whether the much-heralded ideals are working on the ground is a still a lack of information.

While the Valuing Support Team has collected local authority performance data, it openly admits the accuracy cannot be guaranteed as the information remains “patchy”.

David Congdon (pictured right), head of external relations at learning disability charity Mencap, believes that poor availability of information on how Valuing People targets are being met reflects the government’s “low prioritisation” of the strategy.

“If we had sufficient information on what is happening in the lives of people with learning disabilities, we could bring greater pressure to bear on local authorities to galvanise better implementation,” he says.

According to the Valuing People support team, information on progress in some areas of the strategy is “almost non-existent” including:

• what has changed for children with learning difficulties and their families

• what happens for young people leaving school or college

• how many people rent or own a house of their own

• how well health services look after people with learning difficulties

• what is happening in the lives of people with learning difficulties from BME communities, and people with high support needs.

Learning difficulty campaigners are urging councils, the NHS, the Commission for Social Care Inspection and the Health Care Commission to find better ways to measure results, and to ensure that information is collected and reported in a consistent way.

The picture so far

This year’s report of the Valuing People Support Team showed varying progress across the country, with many areas showing that getting the right help for people with learning difficulties remains a “postcode lottery.”

Direct payments

The Valuing People progress report highlighted that the number of people with learning difficulties getting direct payments has grown faster than for any other group, nearly doubling in one year to 2,360 in September 2004.

But the report said progress had been slow and also raised concerns that councils were only giving direct payments to about two per cent of the people they know.

Snapshot statistics from September 2004 show that five councils – Bracknell Forest, City of London, Haringey, North Lincolnshire and Rutland – did not make any direct payments to people with learning difficulties.

Durham showed the highest figure with 125 from the same period.

Across the regions, the most direct payments – 570 - were issued to people with learning difficulties in the North West, while the East Midlands issued the least with 166.

People living out of area

The Valuing People report found that too much council and NHS money is still locked into ‘out of area’ placements, with people still living in NHS beds.

Surrey showed the highest number – 345 - of people with learning difficulties living out of area based on a snapshot figure from March 2004, followed closely by Hertfordshire with 315.

The lowest figure was in Halton with just five in the same period.

Long-stay hospitals

Some local authorities missed the original Valuing People deadline to close all the long-stay hospitals by March 2004. The Valuing People progress report attributes this to slow and ineffective local planning. A new deadline has been set for March 2006.

Statistics show that Suffolk had the highest number of people living in long-stay hospitals – 116 – in April 2004, followed by Bromley with 111. 

15 of the 20 long-stay hospitals were still open at the time of an investigation by Community Care in February 2005, although the majority of the institutions said they were in the process of moving residents out and were “confident” of meeting the March 2006 deadline.

Following the closure of long-stay hospitals, the NHS are being urged focus on the 3,000 people with learning difficulties who live in what are known as NHS campuses, where people are legally defined as patients although they are not in hospital.

The Valuing People support team has set out the closure of these campuses as the next priority for NHS institutional replacement.

Other areas the Valuing People support team has raised concern over are:

Paid work - Only about one in 10 people with learning difficulties in touch with services are doing any form of paid work, with extremely wide variations across councils.

Between 2003-4, 51 per cent of people with learning difficulties were in paid work in Peterborough, compared to just one per cent in Middlesborough.

Ethnicity - People from black and minority ethnic (BME) communities are under-represented in services, and some councils don’t know the ethnicity of many people who are using services.

Young people with person-centred plans - statistics for 2004-5 show that less than half of councils referred young people with person-centred plans to adult services. 31 councils referred all young people with person centred plans to adult services, but 23 failed to refer a single person.

The future

The Valuing People support team has now set out the key challenges facing the future of the white paper implementation for 2010:

• Making sure the Learning Disability Development Fund is used to improve learning difficulty services.

• Making sure the money spent on learning difficulties keeps up with changing demand.

• Giving those leading Valuing People delivery the authority to make change happen

• More government consultation with self-advocacy organisations

• An effective, strategic approach to staff training

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