Personalisation at its simplest is about starting with one person at the centre of any process concerned with responding to social care (and increasingly, health care) needs. SCIE have suggested that this will require ‘significant transformation’ of adult social care services, structures and processes, with implications for the role of social workers.
The researchers in this scoping review study were interested in looking at what the literature had to say about the impact of personalisation on the lives of people with learning disabilities and also on the role played by social workers on supporting autonomy and independence.
What they did was to carry out an electronic database search of literature between 1996 and 2011 using a variety of terms as well as hand searching relevant government publications, grey literature and relevant websites. As a scoping review, the researchers were interested in the wider questions associated with the impact of personalisation and therefore looked a wide variety of studies with varying methodologies.
The initial search identified nearly 5,000 hits, but many of these were bulletins or newsletters and did not make the final review.
Following the application of exclusion criteria, they had 75 articles which were included in the final analysis.
The analysis focused on two key, inter-related questions
(i) what has been the impact of personalisation on the lives of people with learning disabilities
(ii) what has been the role of social workers in this process?
They found that there were few outcome studies measuring impact, but as they point out, personalisation is a relatively recent approach in social work practice, so this was not unexpected.
Interestingly, they suggest that the ‘pivotal’ studies were produced by In Control, the independent organisation which has campaigned for social change which could be viewed as having a strong investment in the success of personalisation.
The authors analyse three key reports from In Control, although they point out that the third was a reassessment of the findings of previous studies.
The first In Control report found increases in satisfaction in services and lifestyle between two points of measurement and the second looked in detail at the views of people with learning disabilities and other groups. This found a mixed view, with some serious concerns emerging. There were some reported low satisfaction rates in the domains of safety and security and economic well-being.
The authors suggest that after early positive and encouraging reports, there began to emerge a number of critical papers. The identified two major themes in the issues that emerged – i. choice and control ii. autonomy and independence.
Choice and control
This first issue is not new to people concerned with supporting people with learning disabilities, but is thrown into sharp relief by personalisation and the use of individual budgets. Some of the studies identified in the review pointed out that for many people with learning disabilities, someone else is managing their budget, with concerns that this can result in them having limited control over the services themselves.
Unsurprisingly, the authors found that the issue of the assessment of mental capacity emerges in relation to supporting choice and control. Many papers discussed the dilemmas faced. They identify a case in Northern Ireland where the family carers of a relative with learning disabilities went to court to challenge the amount of direct payment made by the Health and Social Care Trust. As a result a judicial review of the case established that there was no legal basis for payments to the relative as Northern Ireland law required consent be given by the service user to allow relatives to receive the payments and the person lacked the capacity to give this.
Not surprisingly, a key choice that people wanted to make was the choice of their personal assistants. Some papers found in the review identified a number of issues associated with using individual budgets to employ personal assistants, (an unregulated profession). Some people with learning disabilities in their role of employers were thought to be vulnerable to exploitation.
Autonomy and independence
The authors point out that there is some debate in the literature about the terms ‘autonomy and independence’, particularly the notion that achieving independence might be perceived as the ability to ‘do it alone’, whereas many people with learning disabilities may need some level of support to maintain their daily life. One paper introduced the notion of ‘autonomous dependence’ where an adult with a disability willingly receives help from a support worker maintains a level of control over the relationship.
The role of social workers
The authors found no specific peer-reviewed articles or papers looking at the role of social workers in supporting people with learning disabilities but found a range of papers which commented on the issues more generally.
They identified a number of themes in this literature. A cross cutting theme was the principle of social justice, whereby social workers were encouraged to embrace the idea of personalisation.
Three themes were identified:
- the impact of personalisation on social work and social workers;
- the potential opportunities personalisation represents for changing social work practice;
- the critiques and dilemmas impacting on social work practice.
They identify a number of papers which reflected concerns in social work following the introduction of direct payments. These related to concerns about their use and a desire for social workers to be selective about which service users should have the opportunity to benefit from them. There were concerns relating to the capability of people with learning disabilities to manage their own money and the potential risk of exploitation.
The authors point to a debate around concerns that the transfer of autonomy to service users may represent a loss of autonomy for the social worker, but also to a parallel debate about potential opportunities for increased control by people with learning disabilities, increased flexibility in service responses and the potential for greater independence, all of which was seen to be in line with core social work values, like self-determination and empowerment.
One paper suggests that personalisation and self-directed support might help to take social work beyond what it describes as the ‘limitations of care management and assessment’, opening up opportunities for creativity and new ways of thinking and working.
A critique of personalisation has also emerged however, with some authors suggesting that the introduction of markets has endangered traditional services and that personalisation favours people who are better educated and drives down the employment conditions of paid supporters. This is also expressed as a dilemma for social, with unqualified staff being used to replace the role of social work.
The authors conclude from their scoping study that there is a lack of research literature which directly reports on outcomes of personalisation for people with learning disabilities and on the engagement of social workers in the process.
They conclude that there is “insufficient research evidence to meaningfully track progress for people with learning disabilities or adequately describe the impact of the changes on the roles of social workers who support them.”
A scoping review of personalisation in the UK: approaches to social work and people with learning disabilities, Sims D & Cabrita Gulyurtlu, S, in Health & Social Care in the Community, 22: 13–21.