Magito-McLaughlin, D., Spinosa, T., & Marsalis, D,

2002,

Reviewed by Janet Robertson,
Institute for Health Research,
Lancaster University

Methodology

This chapter describes barriers to person centred planning that are inherent in large, traditional service models for people with learning disabilities in the US, such as supporting a large number of people, the use of separate staff at the home and day centre, and shared transport. A matched group comparison design is used to evaluate an alternative model of provision which established PCP as the starting point for each person's individualised support plan. The alternative model involved 4 people living in a small 4 bedroomed house with individually developed community based day supports. Each person had access to one to one support and access to their own vehicle. A single staff team was employed across all times of day and settings (ie home, work, community).

A total of 8 people with learning disabilities and autism took part in the study: 4 people in a large traditional service; and 4 in the small house. All showed severe challenging behaviour. Participants were matched on age and residential background. Direct care staff recorded continuous data on activities during all waking hours (7am to 10pm) using a data sheet. Data was collected regarding: type of activity; purpose; use of formal instruction; time of day; time spent doing activity; location; whether it involved paid staff or natural supports; and whether challenging behaviour occurred. Staff also rated the person's preference for the activity on a 5 point scale based on their apparent enjoyment from 1 'love it' to 5 'hate it'. Data were collected for 5 weeks at home, work and in the community. For analysis, a single week long period was randomly selected for pairs of participants. It was not possible to collect reliability data on the observations made by staff. Reliability for the extraction of data from the data sheets was 84%.

Critical appraisal

As the authors note, 'the quasi-experimental design lacks rigor and control. It is also based on a small sample size. The subjects were not matched on key variables such as ability or level of challenging behaviour. One of the main limitations of the study is the use of paid staff as observers over a 5 week period. The levels of missing data were such that it was not possible to look at a full 7 day week for 2 pairs of participants so that a 'week' as a unit of analysis varies from 5 to 7 days. There is also no reliability data for the observations. With regard to PCP, it is not clear to what extent PCP was implemented within the alternative model. It is also not clear whether or not PCP implementation was attempted in the traditional model. It is not possible to tell whether differences in quality of life indicators are a result of PCP per se or differences that would have occurred in the alternative setting even if PCP were not implemented.

Key findings

The results compared quality of life indicators in the two models (traditional and alternative). The indicators were based on 5 essential outcomes of PCP: community participation/inclusion; choice; relationships; respected roles; and personal skills/competence.

In the area of community participation, those in the alternative model visited more places in the community, experienced a wider range of activities, and spent more time in inclusive rather than segregated settings. In the traditional model, a total 20 places in the community were visited, compared to 86 places visited in the community. Those in traditional settings spent two thirds of their time in segregated settings compared to 14% in the alternative model. In the area of choice, preference data indicated that alternative model participants engaged in less activities that were judged to be 'neutral' or not preferred (33%) compared to over half of activities in the traditional setting. For relationships, those in the alternative model had more contact with people who were not paid to work with them (three out of four participants compared to one out of four participants in the traditional setting). For respected roles, in traditional settings 34 activities were associated with severe challenging behaviour. In the alternative model, 5 activities associated with severe challenging behaviour. Also, all 4 participants in the alternative model had diverse opportunities for job development and community service activities. For personal skills, whilst there was much more goal based instruction in the traditional model (17% of activities compared to 2% in the alternative model), those in the alternative model had frequent access to experiential learning and incidental teaching, taking part in nearly 50% more activities.

Social work practice/policy implications

The study illustrates the benefits of small, community-based services for people with learning disabilities on a range of quality of life indicators. It also demonstrates on a practical level ways in which such service models can be made more conducive to person centred planning by minimising the sorts of barriers than can be found in traditional settings. This includes: converting day centre 'slots' to individualized, community-based day supports planned around the person's interests; access to one-to-one support; providing individualised transportation; and using a single team of staff across home, work and community environments.