Angela Hallam

Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities

Little information is available on the prevalence and determinants of lifestyle related risk factors for poor health (obesity, poor diet, physical inactivity, smoking and alcohol abuse) among people with intellectual disabilities. This study reports the prevalence of these risk factors for 500 people with intellectual disabilities living in different forms of residential provision in the UK. Variables which predict the presence of these risk factors are also identified. While levels of smoking and alcohol abuse were low, the prevalence of poor diet, obesity in women and physical inactivity was high. Analyses of predictors of risk factors present a mixed pattern with regard to participant and service characteristics, with greater ability and less restrictive residential settings being associated with poor diet, smoking and obesity, but physical inactivity being associated with lower ability and more restrictive settings. It is argued that increasing levels of moderate or vigorous physical activity among people with intellectual disabilities would be the single most effective way of improving the health of people with intellectual disabilities.

Receipt of psychotropic medication by people with intellectual disability in residential settings

Previous studies have reported that the rate of prescription of antipsychotic medication for people with intellectual disability is far in excess of the expected prevalence of psychoses for this population. Recent research identifying factors which predict the use of psychotropic medication suggests that challenging behaviour may play a key role in determining the receipt of antipsychotic medication. The present study reports the prevalence of psychoactive medication receipt for 500 people with intellectual disability living in different forms of residential provision in the UK. Variables which predict the receipt of psychotropic medication are also identified. The results show differences between forms of residential provision in rates of medication receipt. Analyses of predictors of psychotropic medication receipt suggest that, whilst the receipt of antidepressants is predicted by symptoms of mental ill health, the receipt of both antipsychotics and hypnotics/anxiolytics is predicted by variables related to challenging behaviour.

Quality and Costs of Supported Living Residences and Group Homes in the United Kingdom.

Information was collected on 63 adults in supported living residences, 55 adults in small group homes, and 152 adults in large group homes. Results indicated that (a) there were no statistically significant differences in service costs once these had been adjusted to take account of participant characteristics; (b) compared with participants living in small group homes, those in supported living residences had greater choice, participated in more community-based activities, experienced fewer scheduled activities, were more likely to have had their home vandalized, and were considered at greater risk of exploitation; (c) compared with participants living in large group homes, those in small group homes had larger social networks, more people in their social networks who were not staff, not family, and did not have mental retardation. These residents were considered at less risk of abuse.

The quality and costs of community-based residential supports and residential campuses for people with severe and complex disabilities

The costs, nature and benefits of residential supports were examined for 20 adults with severe and complex disabilities living in newly built residential campuses and 20 adults living in small community-based dispersed housing schemes. Results indicated that participants living in dispersed housing schemes enjoyed a significantly greater quality of care and quality of life than participants living in residential campuses. The total costs of provision in dispersed housing schemes were significantly greater than the total costs of provision in residential campuses. These differences were accounted for by significantly greater direct staffing costs in the community-based services.

Quality and costs of community-based residential supports, village communities, and residential campuses in the United Kingdom

The costs, nature, and benefits of residential supports were examined for 86 adults with mental retardation living in village communities, 133 adults living in newly built residential campuses, and 281 adults living in dispersed housing schemes (small community-based group homes and supported living). Results indicated that (a) the adjusted comprehensive costs of provision in dispersed housing schemes were 15% higher than in residential campuses and 20% higher than in village communities; (b) dispersed housing schemes and village communities offered a significantly greater quality of care than did residential campuses; and (c) there appeared to be distinct patterns of quality of life benefits associated with dispersed housing schemes and village communities, with both approaches offering a greater quality of life than did residential campuses.

Environmental opportunities and supports for exercising self-determination in community-based residential settings.

Information was collected on the environmental opportunities for exercising self-determination among 281 adults with mental retardation receiving community-based residential supports. The results indicated that: (1) the majority of participants had little or no opportunity to exercise self-determination over major life decisions (e.g., with whom and where to live, the recruitment and retention of care staff); (2) even in more mundane areas, such as where and when to eat, the majority of participants were not supported to exercise effective control; (3) variation in environmental opportunities to exercise self-determination was strongly related to a range of factors including participant ability, previous residential history, and structural and procedural aspects of the residential supports currently provided.

Exploring the relationships between costs and quality of services for adults with severe intellectual disabilities and the most severe challenging behaviours in Wales: A multivariate regression analysis

A survey in Wales of people with severe intellectual disabilities and the most severe challenging behaviour identified 17 adults living in new specialist community housing and 19 in traditional services. With the omission of two people from the latter group, this study explored the relationships between resident characteristics, service characteristics, service processes, quality of life outcome and costs in a series of mutivariate regression analyses. Higher accommodation costs were associated with lower resident ability and community services. Costs were inversely associated with setting size when the variable representing service model was omitted, but setting size did not otherwise add to explanation. Resident autonomy was associated with higher resident ability, community services or smaller setting size, and lower staff:resident ratios. Participation in domestic life was associated with higher resident ability and community services or smaller scale. More frequent community involvement was associated with higher resident ability and smaller setting size, with lower levels of challenging behaviour and greater individual orientation as subsidiary influences. Higher resident engagement in activity was associated with higher resident ability and the extent of interaction between staff and residents which, in turn, was primarily associated with service model. Variation in the various quality of life indicators measured did not contribute to the explanation of accommodation costs. Variation in accommodation costs did not contribute to the explanation of the level of staff:resident interaction or quality of life, neither did staff:resident ratios, after control for service model.

Quality and costs of community-based residential supports for people with mental retardation and challenging behavior

A longitudinal matched-groups design was used to examine the quality and costs of community-based residential supports to people with mental retardation and challenging behavior. Two forms of provision were investigated: noncongregate settings, where the minority of residents had challenging behavior, and congregate settings, where the majority of residents had challenging behavior. Data were collected for 25 people in each setting. We collected information through interviewing service personnel in each type of setting on the costs of service provision, the nature of support provided, and the quality of life of residents. We also conducted observations in each setting. Results suggest that noncongregate residential supports may be more cost effective than congregate residential supports.

Formal and informal care for people with dementia: variations in costs over time

The services used by people with dementia and their carers were measured at three time points over 17 months. This analysis is unusual in that both informal care and formal inputs were costed. The costs estimates for informal inputs developed here may be applied to other data sets. Two hypotheses to explain the inter-relationship between informal and formal care inputs, substitution and supplementation, were compared in analysing the data. This paper explores the variations in costs according to the living arrangements of the people with dementia, by level of dependency and over time, and finds systematic differences. The costs of the inputs from co-resident carers consistently exceeded the costs of formal services, with informal care constituting up to 40 per cent of the total costs burden for dementia care. When informal inputs were included, non-domestic residential care emerged as less, not more, costly than care in the community. There was a shift in costs burden from health services to social services over time as more people moved into non-domestic settings. Multivariate analyses identified several predictors of informal and formal care costs: physical disability, level of cognitive impairment, living in non-domestic settings, and formal care provided. Non-domestic care predicted lower inputs of both formal and informal services. Dementia level was positively associated with informal inputs. Physical frailty was associated with more formal care, but less informal care. More formal service inputs predicted higher informal care inputs. There is evidence of supplementation of informal care by formal services in the early stages of care, followed by substitution as the person with dementia enters residential care.

Formal and informal care for people with dementia: Factors associated with service receipt

Details of service receipt by 132 people diagnosed with dementia and their carers were collected in South London (boroughs of Lewisham, Camberwell, Southwark and Croydon), a geographical area served by several health and social care providers. The data collected included the Caregiver Activity Survey, which details the informal care given. This paper reports the formal and informal services received by the people with dementia at entry to the study. The amount of time spent on specific caring tasks by all informal carers of people with dementia averaged seven hours per week, but was significantly higher for co-resident carers, even when controlling for the level of dependency of the person cared-for. The odds ratios of receipt of formal services are given, according to where people were living: in the community or residential care, with co-resident carers or alone.