Abstract
Despite changes in the nature of supported accommodation services for people with learning disabilities, little progress was made during the '70s, '80s and '90s in addressing the extent of unmet need. While the advent of Supporting People has more recently led to an increase in the volume of provision, unmet need continues to be a major concern to people with learning disabilities and their families. There is good reason to believe that, as a result of changes in the demographic profile of people with learning disabilities, changes in expectations and changes in the pattern of informal care, this issue will become substantially more pressing over the coming two decades. This paper attempts to estimate the nature and extent of increased need.
IntroductionThe last four decades have witnessed dramatic changes in the way we have provided supported accommodation for people with learning disabilities. In 1976, more than 50,000 people with learning disabilities were living in large-scale NHS long-term institutional provision. In effect, institutionalisation was the only option for people with learning disabilities who could not live relatively independently and who, for whatever reason, no longer lived with their family. In 2006 the last of these NHS institutions will close. In their place we now have an array of smaller, more community-orientated provision (Emerson, 2004).
There is little doubt that these changes have, overall, been to the benefit of people with learning disabilities and informal carers (Emerson & Hatton, 1994; Hatton & Emerson, 1996). There is also little doubt that the gains made are still far from sufficient to afford many people with learning disabilities an acceptable quality of life (Emerson et al, 2005).
Improving the quality of supported accommodation is, however, only part of the problem we are currently facing. The other key part relates to increasing the supply of supported accommodation services in order to meet current and future need and demand. The 1971 White Paper Better Services identified a significant shortfall in the volume of provision, and set specific targets for increasing volume by 1991. The best estimate is that no progress at all was made towards these targets over the following three decades (Emerson & Hatton, 1998), and that unmet need for supported accommodation for people with learning disabilities continued to constitute a major problem (Watson, 1996).
In this paper I will address three questions that are relevant to estimating current and future need and demand for supported accommodation services for people with learning disabilities.
* How many adults with learning disabilities are there in England?
* Do the numbers of adults with learning disabilities vary by area?
* How might the need and demand for supported accommodation change in the future?
How many people with learning disabilities are there in England?
There are two quite different answers to this question. Our best estimate (derived from analysis of learning disability registers) is that 0.46% of the adult population of England are users (if only on an occasional basis) of services for people with learning disabilities (Emerson & Hatton, 2004b). This is equivalent to approximately 170,000 adults aged over 20 in England.
We know from epidemiological studies (Leonard ft Wen, 2002), however, that the 'true' prevalence of learning disabilities is much closer to two per cent of the adult population (equivalent to approximately 800,000 adults aged 20 or more). The discrepancy between these two figures is due to a combination of factors, including the use of eligibility criteria to exclude people with lower support needs from services, and the reluctance of some people with learning disabilities to identify themselves as such during their interactions with service providers.
Table 1, below, gives estimated age-specific prevalence rates for the 'administrative' and 'true' populations of people with learning disabilities in England. These estimates can be used to predict the number of adults with learning disabilities who, on average, would be expected to be eligible for services in any given area.
Does the number of adults with learning disabilities vary by area?
Epidemiological studies have consistently reported that the prevalence of less severe learning disabilities (and learning disabilities that have no clear biological basis) is closely related to level of social deprivation (Leonard et al, 2005; Leonard & Wen, 2002). Poverty is a major cause of learning disabilities. There is also some evidence to suggest that the prevalence of more severe learning disabilities may be higher among some minority ethnic communities (Emerson & Hatton, 2004c).
Figure 1, below, shows how the potential need for supported accommodation services varies between areas with different levels of social deprivation. The data are taken from the first national survey of the life experiences of English adults with learning disabilities (Emerson et al, 2005). The figure shows the variation in the percentage of adults living in private households (that is, not living in the supported accommodation sector) when compared with an 'average' area in England. Each column represents 20% of the population of England, running from the 20% most deprived areas to the 20% most affluent areas. The measure of deprivation used to construct this figure was the multiple deprivation index from the English Indices of Deprivation 2004 applied to lower level super-output areas (Noble et al, 2004). These figures could be used in conjunction with the estimates derived from Table 1 to adjust estimated local need on the basis of the level of deprivation of local areas. So, for example, a local authority covering an area in which all super-output areas fell within the most deprived 20% in England would be expected to have a 52% increased potential demand for supported accommodation services for people with learning disabilities.