Research: knowledge gaps on people with learning disabilities in England

   by Bob Hudson

ABSTRACT

This report, commissioned by Mencap and the Learning Disability Coalition, aims to summarise information on the numbers, life experiences and services used by people with learning disabilities in England. As well as reporting on the available evidence, the report also considers the viability of this data in supporting an outcomes-based approach to service development.

METHODS

The authors examine data from national sources, typically surveys commissioned to inform policy development. It therefore excludes the many smaller local surveys, evaluations and pieces of independent research that are available. The report mainly focuses on adults, but includes information on data collection for children and young people. Two main kinds of data are reported: from government departments, which tends to concern aspects of service activity and data on people’s life experiences, drawn from a national survey commissioned to evaluate the impact of Valuing People.

FINDINGS

The overall finding, rather chillingly, is that it is not possible to estimate the number of people with learning disabilities in England, either from information held by government departments, or from large-scale population based surveys.

The official estimate on children suggests that about 170,000 pupils have a primary special educational need associated with moderate learning difficulty, 30,000 with severe learning difficulty and 8,000 with profound and multiple learning difficulty. The authors suggest this is an underestimate, because data is restricted to children with a special needs statement, and is only reported on the child’s primary special need.

In the case of adults there is broad agreement with the official figure on people with severe or profound learning disabilities (145,000), but it is suggested that the figure for those with mild disabilities is under-estimated because many do not use specialist services.

Estimating the change in the incidence and prevalence of learning disability is even more difficult, but the authors identify three factors likely to lead to an increase over the next two decades:

● An increase in the Bangladeshi and Pakistani South Asian ethnic minorities, among whom evidence suggests there may be a two to threefold increase in the prevalence of more severe learning disability.

● Increased survival rates among young people with severe and complex disabilities.

● Reduced mortality among older adults with learning disabilities.

Services and Support

The overall level of support for people with learning disabilities has increased, but the pattern of support has changed and the provision is variable. In line with government policy the number of overnight beds in NHS and independent sector hospitals has been falling but is far from being eliminated, and there has been a small decrease in the number of people in council-supported residential accommodation. Unit costs, however, have increased either in line with inflation (in the case of nursing homes) or above it (care homes).

It is in community services that much of the increased activity can be found. A growing proportion of this activity has been on process rather than provision. In 2005-6, social services authorities spent more than £200m on assessment and care management for adults with learning disabilities aged under 65 – up 96% from the position in 2000-1. The numbers receiving a service of some kind are also up by almost a quarter over the same period, but the picture does reveal variations:

● 27,000 people received home care – up by 197%.

● 58,000 people received day care – a similar figure to 2001.● 1,100 received meals – a decrease of 48%.

● 12,000 received overnight respite, an increase of 9%, and a further 5,800 short-term residential respite (up 18%).

● 38,000 people received “professional support” – up 53%.

● 5,500 received a direct payment – a huge increase of 2,560%, but from a very low base.

Life Experiences

Whether this expenditure adds up to a positive life experience is another question, and here the authors draw upon evidence from a survey undertaken in 2003-4 as part of an evaluation of the impact of Valuing People. The broad findings are not encouraging.

Most people, no matter what their level of disability, are living at home, usually with parents, but those with more severe disabilities are more likely to be living in residential care homes and NHS accommodation – not far short of one-fifth of the total. About one in 10 of people are in supported accommodation, but most appear to have no choice over who they live with or where they live.

Most people with learning disabilities are unemployed (83%). Job prospects are better for those with mild/moderate disabilities (28% in work), but most of those in work are on very low wages. Just over one-third (36%) were undertaking some form of education or learning, but this was much less for those with profound and multiple learning disabilities (14%). Almost four out of 10 still attend a day centre, with much higher attendances for those with severe (49%) and profound/multiple (66%) learning disabilities.

People with learning disabilities are much less likely to have contact with friends and members of their family that they are not living with. The survey explores participation in a wide range of community activities and finds much variation. For example about 90% reported going shopping but only one-fifth had been to a sporting event. On all activities the figures are very much lower for people with profound and multiple disabilities.

ANALYSIS

Although this work consists of secondary research, it fulfils a useful role in pulling together existing data from national sources. The revelation that we do not know with any certainty the number (let alone the needs) of people with a learning disability in the country should set alarm bells ringing loudly, and better information must surely be an important aspect of every joint strategic needs assessment in England.

The report also draws attention to the ever controversial postcode lottery. Inexplicable variations are found on almost any indicator with some councils spending two to three times as much as others on things like advocacy and short breaks. This is a policy issue that is growing in political significance, as shown by the government’s concern about the different ways in which councils determine their Fair Access to Care eligibility bands.

Perhaps the main implication for practice concerns the shift towards an outcomes focus for deciding whether or not support and intervention is successful. This is something that has been proposed for many years in the learning disability field, stretching back as far as O’Brien’s accomplishments framework back in the 1980s. The authors outline some of the issues involved in developing national information systems based on outcomes, rather than resources or service activity (see box).

They make important recommendations. The government is now committed to a policy approach centred on personalisation and outcomes, and it must therefore rethink the way it collects data and assesses performance.

The Commission for Social Care Inspection is consulting on the content of the “grade descriptors” for inspecting against the seven outcomes outlined in Our Health Our Care Our Say, and the work reported here should play into this development. But we cannot properly assess outcomes in people’s lives until we are better informed about numbers, needs and aspirations.

Bob Hudson is visiting professor of public policy, School of Applied Social Sciences, University of Durham

RESOURCES

● Emerson E, and Hatton C, People with Learning Disabilities in England. Centre for Disability Research, University of Lancaster, 2008. 

● Hatton C, Emerson E, and Lobb C, Moving Towards Evaluating Valuing People in Practice. Institute for Health Research, University of Lancaster, 2006.

● Commission for Social Care Inspection, A Consultation on Changes for the Performance Assessment of Adult Social Care 2008-9, 2008.