Personalised or individualised supports are those which respond to unique needs of an individual, which focus on their personal assets and abilities; accentuate choice and control and are delivered in the community alongside other citizens.
In recent years in the Republic of Ireland, there has been an increasing focus in public policy on personalisation for people with support needs relating to disability or mental health issues.
The researchers in this study undertook a 20 month evaluation of a series of nationally supported projects that had as a central aim helping people to move from congregated to personalised settings.
Twenty four projects were involved in the evaluation across Ireland, thirteen of which were projects supporting people with learning disabilities, eight for people with mental health issues and 3 for people with physical disabilities. Two hundred and sixty individuals were invited to participate, but as a result of a number of people declining or dropping out of the study, the results relate to 197 people
The researchers collected data using semi-structured interviews and a range of rating scales at three time points, T1 at the start of the research, T2 after nine months and T3 at twenty months. This mixed methods approach was used to get a rounded picture of the lives of the people involved in the project, with the researchers looking at accommodation type, supports offered, quality of life, costs and leadership and management of change.
What they found was that there were a number of changes in accommodation status for the people involved in the projects from T1 to T3 –
- 23 people had moved from congregated to personalised settings
- 35 people had moved to group homes (defined as houses in community settings with up to 6 people – people with learning disabilities were much more likely to move to group home settings than other groups.)
- 42 people had remained in congregated settings
- 20 stayed in their family homes
- 40 had already moved to personalised settings at T1 and all remained there at T3
Across a range of the outcomes measured, personalised services produced better outcomes than congregated care, and quality of life was poorest for those who remained in congregated settings
Where people had moved to group homes, they found that often people had not had choice about the people they lived with and that these settings did not offer personalised support.
Interestingly, some of the best outcomes were found for those people who lived with families and there were a range of support arrangements to those settings.
In common with earlier evaluations of the closure of long-stay hospitals in the UK, Community engagement and social relationships were not significantly increased in personalised settings. The researchers suggest this finding may be a function of the short timeframe of the research and that building links to the community may take more time.
They found no statistically significant differences in the relationship between level of support needs and changes in accommodation status, although people moving to group homes were rated as having the highest support needs.
With regard to health status, those in congregated settings rated themselves as having poorer health at T3 than groups in other settings.
There were considerable anxieties and concerns expressed by relatives of those people supported at the start of the process, but the findings of suggest that many of these were not borne out and that active involvement of relatives in planning and investing in open communication can help to overcome anxieties over time.
With regard to costs, in line with findings elsewhere, the researchers suggest that personalisation can save on costs overall, but that there are significant variations in individual costs, with some new services being significantly less costly and others significantly more costly than congregated settings.
There are a number of personal stories in the research which capture some of the changes that have taken place for people, often related in terms of growing confidence, developing new skills, having new experiences or broadening lifestyle choices. These stories also reflect the changing role of support staff. Staff were supported to think more creatively about their role and also to be more flexible in terms of the way in which support hours were delivered, led by changes in lifestyle for the person supported.
Conclusion and comment
This is a sizeable project which drew data from 24 projects supporting nearly 200 people over a 20 month period. Data was drawn from a variety of respondents and the project structure clearly put the person at the centre of the process. It tried to marry qualitative and subjective indicators of quality of life with quantitative and objectives measures of outcomes and costs and the process of change management and leadership.
The projects in the evaluation were part of a national change programme in Ireland and in that regard were some of the early adopters of this approach in the country and could be seen as having a commitment to personalisation before the project began.
However, this research does add weight to the view that personalised support and housing is achievable and produces better outcomes than congregated settings. The project was only able to cover a twenty month period, so some services and settings were still very new at T3 measurement. Previous evaluations have shown good outcomes in the early life of projects that have been partly a product of the focus and attention of nationally funded demonstration projects.
The work on costs, as ever, carries significant health warnings in the text of the report, but adds to the ever growing body of evidence that suggests that personalised services are not more expensive than congregated services, but that there are, not unexpectedly, significant variations in individual costings.
It was disappointing to see that despite this project having a focus on personalised services, that many people with learning disabilities moved to group home settings and that their experience was one of limited choice and control over this process.
It is also concerning that outcomes for community engagement and development of social relationships once again showed poorer outcomes than for those relating to activities of daily living suggesting that there may need to be an even more intensive focus on this area in future moves from congregated to individualised settings in future.
Download the full report here: An evaluation of personalised supports to individuals with disabilities and mental health difficulties, McConkey R et al., University of Ulster