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Intellectual disability, challenging
behaviour and cost in care
accommodation : what are the
Martin Knapp PhD, Adelina Comas-Herrera MSc, Jack
Astin MSc, Jennifer Beecham PhD, Claude Pendaries
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Cite this version:
Knapp, M.; Comas-Herrera, A.; Astin, J.; Beecham, J; Pendaries, C.
(2005). Intellectual disability, challenging behaviour and cost in care accommodation: what are the links? London: LSE Research Articles Online.
Available at: http://eprints.lse.ac.uk/archive/00000336/ This is an electronic version of an Article published in Health & Social Care in the Community 13 (4) pp. 297-306 © 2005 Blackwell Publishing.
http://dx.doi.org/10.1111/j.1365-2524.2005.00539.x http://eprints.lse.ac.uk Contact LSE Research Articles Online at: Library.Researchonline@lse.ac.uk
INTELLECTUAL DISABILITY, CHALLENGING BEHAVIOUR AND COST IN
CARE ACCOMMODATION: WHAT ARE THE LINKS?Martin Knapp PhD1,4, Adelina Comas-Herrera MSc1 Jack Astin MSc1, Jennifer Beecham PhD2,4 Claude Pendaries PhD3
1. Personal Social Services Research Unit, LSE Health and Social Care, London School of Economics
2. Personal Social Services Research Unit, University of Kent
3. West Kent NHS and Social Care
4. Centre for the Economics of Mental Health, Institute of Psychiatry, King’s College, London CONCISE TITLE: Intellectual disability, challenging behaviour and cost CORRESPONDENCE: Professor Martin Knapp, PSSRU, LSE Health and Social Care, London School of Economics, Houghton Street, London, WC2A 2AE. Telephone 0207 955
6225. Fax 0207 955 6131. Email firstname.lastname@example.org.
ACKNOWLEDGEMENTS: The data used in this paper were originally collected for another research project, funded by the NHS Information Authority. We acknowledge the advice of Richard Carthew during that earlier study, the help of Annabelle May in later stages and the referees for their comments.
ABSTRACTThe paper examines the links between degree of intellectual disability, challenging behaviour, service utilisation and cost for a group of people with intellectual disabilities living in care accommodation in England. A cross-sectional survey was conducted of people with intellectual disabilities, identified via provider organisations, with supplementary collection of costs data. Multivariate analyses of cost variations were carried out for 930 adults with intellectual disabilities. There were strong, non-linear, interdependent links between degree of intellectual disability, behaviour, service use and costs. Higher costs were associated with more severe intellectual disabilities and more challenging behaviour. Sector and scale of residence also influenced cost in quite complex ways. Access to and use of services by people with intellectual disabilities were not always appropriately linked to perceived or actual needs. Policy makers and local commissioning agencies need to explore the sources of cost variation between individuals, sectors and types of accommodation in order to achieve national policy objectives on quality, choice, independence and inclusion.
KEY WORDS Intellectual disability, challenging behaviour, service use, costs 2
INTRODUCTIONThe White Paper Valuing People: a New Strategy for Learning Disability in the 21st Century identifies people with intellectual disabilities as ‘amongst the most vulnerable and socially excluded in our society’, and sets out four key principles – rights, independence, choice and inclusion – for improving their quality of life chances (Secretary of State for Health 2001).
The Government’s national objectives for people with intellectual disabilities are built around a person-centred approach that enables them ‘to have as much choice and control as possible over their lives and the services and support they receive’ (p 4). The cost implications and broader affordability of a person-centred approach have been questioned (Mansell and Beadle-Brown 2004).
As no two users of a given service or programme will have exactly the same characteristics or needs, or hold the exact same preferences – and because they will also differ in their personal and family circumstances – it follows from a person-centred approach that service responses should rarely be identical. Such an approach starts with the individual and not with services, and the White Paper argues that all options should be considered when the future needs of people with intellectual disabilities and their families are being explored. Local authorities also have the duty of Best Value: they must deliver services by the most economic, efficient and effective means available, publish annual Best Value Performance Plans and review all of their services every five years.
In reality, however, service use patterns tend to show rather less variability than individual needs or preferences. This is partly because services are constrained by historical availability, funding practices, professional norms and provider habits; partly perhaps because of a simple but pervasive societal preference for some degree of consistency or procedural equity in service access, and partly because the information on user needs available to commissioners (purchasers) has been less than perfect. One of the unlamented features of care environments in some of the UK’s former ‘mental handicap’ hospitals was the often very marked degree of uniformity and rigidity that ignored differences between individuals. This is one of the defining features of an ‘institutional’ environment. But now that services for almost everyone with an intellectual disability in the UK are delivered in non-hospital settings, albeit not always ‘non-institutional’, we must ask whether service systems are responding more flexibly to individual needs and preferences.
3 The aim of this paper is to address this question. In particular, we seek (a) to describe the patterns of service use and costs for people with intellectual disabilities in care accommodation in some areas of England; (b) to explore the correlates of those patterns; and (c) to examine the degree to which cost variations are linked to the characteristics of users (notably degree of intellectual disability and behavioural problems) in the context of other factors.
METHODS Sampling and data collection Data were collected as part of a study designed to develop ‘resource groups’ and ‘benefit groups’ for people with intellectual disabilities (Pendaries 1997a, Comas-Herrera et al. 2001).
There were three phases of data collection, covering: (i) characteristics of sample members, (ii) their use of services and (iii) the unit costs of services.
The first phase, in 1996, assessed the characteristics of a sample of over 2000 people with intellectual disabilities aged 18 or over on two dimensions, intellectual disability and challenging behaviour, using a revised version of the Learning Disability Casemix Scale (LDCS; Pendaries 1997b). Sample members were living in residential accommodation supported by 11 NHS Trusts, four voluntary providers (including housing associations) and three large and several small private providers spread across England. Each organisation that agreed to take part in the study was sent LDCS assessment forms (see below), together with written instructions on how to administer them. In total, information was collected for 2093 people in this first phase. This was a pragmatically gathered sample and the areas and providers together do not generate a nationally representative sample of people with intellectual disabilities.
In the second phase, service use data were gathered for a sub-set of clients using a tailored version of the Client Service Receipt Inventory (CSRI; Beecham & Knapp 1992). The CSRI was sent to the 14 providers willing to continue in the research. Together they supported 1300 people with intellectual disabilities. Questionnaires were returned for 1128 service users, or 4 87% of those participating in this phase. Eight questionnaires were unusable due to missing information.
In the third phase, a newly developed costing pro-forma (see below) was sent out to gather revenue and capital costs information. Although some organisations were unable to provide the cost information required, the response rate was generally good: data were provided for 930 people (83% of the 1128 people for whom CSRI information had been returned).
Housing associations and private sector providers were less likely than others to provide financial information. (The housing associations had not been directly involved in previous phases of the project and possibly had fewer incentives to return costs data. One of the private providers did not have the necessary financial information readily available.) Research instruments Learning Disability Casemix Scale (LDCS) The instrument used to assess the 2093 participants in the first phase was a revised version of the LDCS (Pendaries 1997b). It has two main dimensions: intellectual disability and challenging behaviour. In the revision, two items were added to the ability/disability subscale, bringing the total number of variables for the ability/disability sub-scale to 14. Two further variables were also added to the behaviour sub-scale, bringing the total number of behaviour variables to nine. The items added to the ability/disability subscale (‘Self Initiated Activity’ and ‘Ability to Sustain Attention’) were intended to account for limitations of the learning process, an aspect not covered in the original scale. The two items added to the challenging behaviour sub-scale (‘Dealing with Frustration’ and ‘Excess or Deficit of Social Interaction’) were intended to capture relatively common forms of behaviour that often result in increased staff input. These changes improved the validity of the scale (Comas-Herrera et al. 2001). In both sub-scales, higher scores indicate higher levels of severity.
The validity of the LDCS has been tested in relation to the Adaptive Behaviour Schedule (Nihira et al. 1993), a well-established research instrument, and been found to measure similar things. The LDCS has also been found to have good inter-observer reliability and good test-retest reliability (Pendaries 1997b).
5 Client Service Receipt Inventory (CSRI) To collect information on individual service utilisation patterns, a version of the Client Service Receipt Inventory (CSRI) was prepared. The CSRI was reduced so that it covered only two sides of A4 paper and concentrated on accommodation arrangements as well as the use of services provided and funded separately from the accommodation budget. A retrospective period of three months was selected, although use of services which have high cost implications, such as hospital care, was recorded for a period of 12 months. Note that these services are those not included in the residential accommodation budget.
A separate questionnaire was used to gather information to complement the financial information available from the income and expenditure accounts (for the financial year 1996/97) for each facility in which service users lived. The pro-forma covered the valuation of the buildings in which care was provided (such as the council tax band), whether the home paid overheads and whether services were provided to non-residents. In the main, the finance department of each participating organisation provided these data.
The estimation of costs followed established methodologies and principles of economic evaluation in this field (e.g. Beecham 1995). After collecting service utilisation data using the CSRI we estimated the long-run marginal opportunity cost for each service in a unit of time (per day or per hour) that reflects the way people use it. Each unit cost was then adjusted to reflect the intensity (duration and frequency) of service use to allow calculation of the full cost of each care package.
In estimating the long-run marginal opportunity costs of accommodation facilities the revenue costs included the full staffing costs (care staff and others), adjusted for the hours staff spent providing support to non-residents. Non-staffing costs included items such as heat, light, routine maintenance and household equipment. Overhead costs borne by the managing 6 agency were calculated using the organisation’s own accounts where possible, or by adding 5% of other revenue costs (Audit Commission 1993). Three techniques were used to estimate the level of resources invested in the buildings and equipment (capital costs): a figure based on a recent market valuation of the site discounted at 6% over sixty years; a valuation based on the property’s council tax banding and discounted at 6% over 60 years; or, where considered to be more accurate than the council tax band, rent payments made by the individual organisations and their own arrangements for depreciation of capital. When the organisation could not provide a realistic replacement cost for fixtures and fittings, 10% of the annual building costs was added (as, for example, in the method used by Emerson et al.
For hospital and community-based services not provided by the organisation responsible for accommodation and associated care, unit cost estimates were taken from the widely used annual compilation by the Personal Social Services Research Unit (Netten et al. 1998).
Where costs for specific professionals were not available from this source, unit costs calculated by colleagues and employed in current or recent evaluations of services for people with intellectual disabilities or challenging behaviour were used (Emerson et al. 2001). Some sample members attended work-orientated day activity services. The provision of work for people with intellectual disabilities represents both a cost and a benefit to the employer: the benefit of the goods produced and the cost of the supervising staff. Following the approach adopted by Emerson et al. (2001), we assumed that employers cover their costs and so a zero cost has been recorded for work-related activities.