How public money is spent has perhaps never been subject to closer scrutiny than at present with the reduced funding available being stretched to meet increasing needs. Within this context there are a relatively small group of people with learning disabilities who have complex and challenging needs and whose support needs result in expensive packages of care.

Often such care provision involves the individual being supported in specialist residential services that are sometimes geographically distant from family and local support networks. However, as the Winterbourne View case demonstrated, high costs of care do not always equate to quality and hence there is a need to subject them to scrutiny.

Methods

Data were gathered in 2011 and built upon an earlier survey conducted in 2009/10. Nineteen Local Authority commissioning teams and 18 ‘geographically associated’ NHS Trusts were contacted and asked to provide information concerning their five highest cost placements for adults with learning disabilities.

All data were anonymous and were gathered from existing case files using a one page questionnaire that requested demographic information, details of health and support needs, as well as information concerning the nature and costs of their residential placement.

The questionnaire requested some additional data to the original administered in 2009. The overall response rate was 74% for Local Authorities and 50% for Health Trusts.

Findings

Information was gathered concerning 105 individuals of whom 70% were male and who had a mean age of 32 years. Their needs were reported to include:

• autism (71%)
• challenging behaviour (88%)
• offending behaviour (24%)
• mental health diagnosis (18%)

The majority were reported to be living in residential care (55%), with others living in supported living (17%), hospital (15%), secure/ medium secure units (11%), and forensic settings (10%).

Whilst 43% were recorded as living within their own geographical area the majority (57%) were living in ‘out of area’ placements with the mean distance from home being 79 miles.

Compared with the 2009/10 survey fewer people (57% rather than 71%) were placed out of area.

Whilst the earlier survey did not gather these data it is interesting to note that 53% of the current sample had previously attended a residential school and that this group were placed significantly further away from home than those who had not.

The mean length of current placements was 5.3 years but the range was from one month to 26 years.

The services commissioned were provided by

• private sector (n=82)
• not for profit organisations (n=10)
• NHS (n=4)
• local authorities (n=4)

The mean placement cost within the current survey was reported as being £200,000 although the range of costs varied from £81,000 to £430,000.

Nine commissioning teams reported spending over a million pounds annually to support their five highest cost individuals with the highest cost reported by an NHS Trust being £1.8 million.

Significantly higher costs were associated with being female, having offending behaviour, having attended a special school and being funded by continuing healthcare arrangements.

Conclusion

The authors conclude that a small number of placements account for a high proportion of the budget spent on support for people with learning disabilities and that, given the relatively young average age of those with complex needs supported in this manner, this has significant implications for overall lifetime costs.

It is, however, stated that the value of support rather than the costs should be the primary consideration but it is also recognised that little is known regarding value for money in this context.

Of particular concern is the level of funding that is being spent ‘out of area’ placements which means that less funding is available for local services to develop appropriate support services for those with such complex needs.

The authors advocate a ‘whole-of-life’ approach in which greater attention is given to prevention and early intervention in order to maintain individuals in their families and communities rather than their progression through a pathway into high-costs placements which are often at a distance from home.

Summary and Comment

Whilst acknowledging the limitations of gathering data from case files it is interesting to see information regarding the costs of placements for people with learning disabilities with complex behavioural needs and the factors that seem to place individuals at greater risk of needing such  support.

Nonetheless, it is how this information is used that it important. One option is to simply say that there will always be some individuals who require high levels of support and that they will require the on- going investment of significant levels of funding.

The need to consider value for money must, however, also be heeded and there would seem to be a need for research that examines exactly what support is provided and what the outcomes of such support are.

Whilst such research is required this alone also seems an inadequate response given the suggestion that investment in local, preventative services might stop individuals from becoming involved in a pathway that leads to them requiring high level, high cost packages of care: investment in locally based, early intervention services is also required.

Unfortunately, when funding is limited and some individuals currently require high cost packages of care, it seems difficult to argue for additional funding to develop such local, preventative support services since immediate needs are pressing and the outcomes of prevention may take years to demonstrate.

Shifting the balance to allow greater prevention might, however, reduce costs on a long term basis and this seems to be an important challenge that requires a response not only in terms of financial costs but also, most importantly, in human costs.

Links

Deveau, ,McGill P, Poyner, J, Characteristics of the most expensive residential placements for adults with learning disabilities in South East England: a follow-up survey, in Tizard Learning Disability Review, 20, 2,.97 – 102 [abstract]