How people with learning disabilities are experiencing personalised social care – Researchers from York St John University highlight the importance of listening to the voices of people with learning disabilities when assessing how successful personalised social care is at meeting individuals’ support needs. Lorna Hamilton reports.
STUDY TITLE: PERSONALISED SOCIAL CARE AND LEARNING DISABILITIES
Aims: To explore the daily living experiences of people with mild/moderate learning disabilities in the context of personalised social care and widespread changes to eligibility criteria.
Methods: Twenty-six adults with mild or moderate learning disabilities and 13 representatives of voluntary-sector support organisations took part in seven focus groups in the north of England in 2014. Group discussions focused on people’s experiences of care and support needs assessments, housing, transport, finances, employment, education, health and socialising.
Further information: Report available at – https://ray.yorksj.ac.uk/id/eprint/1650/
Social care has become more personalised in recent decades (1). People can be involved in identifying their own needs and can choose and buy their own care packages through personal budgets. Research indicates that some people with learning disabilities are more satisfied with their lifestyle when social care is personalised (2). However, many people find managing personal budgets stressful and would like more control over selecting personal assistants (PAs) (3). At the same time, fewer people with low to moderate support needs have been eligible to access statutory support services in many local authority areas over the last decade, and some have experienced reduced support (4).
We wanted to find out whether adults with mild or moderate learning disabilities were satisfied with the level of support they were receiving, and whether they felt in control of their care package. Few studies had looked at this from the viewpoint of people with learning disabilities.
Most people were accessing some kind of social care service, and many lived in supported living accommodation or with family members. People were often very satisfied with the level of independence they had but there were different ideas about what independence means. One young woman felt that she would be able to be more independent if she had support to help her get out of the house:
“There’s a lot of places I’d like to go and things I’d like to do and I don’t have anyone that I can go with, and I’d never go by myself”.
Having enough social support, whether through family, friends, support workers including PAs, can be the key to helping people achieve the level of independence they want. However, some people had lost contact with friends when specialist day services closed; others described experiences of loneliness and isolation during times when they were not accessing services. People talked about their experiences of managing personal budgets and employing PAs. One man said:
“It’s also difficult when you have got personal assistants sometimes … you feel as though you’re fitting in with their lives. They’ll ring up and say, ’Oh well, I can’t come at this time today, but I’ll be in at that time’, and then after a couple of hours you know you’re by yourself.”
Being an employer of PAs therefore did not always mean that people felt in control of their care package; this is highlighted by the experience of another person with visual impairment who said:
“It’s difficult y’know because I am the employer and I am trying to be a bit more assertive… Because if they’re coming into your house when you’re not there and then, like I got back at about just after three and she said ‘Oh well, I’ve done your tea, I’ve done the hours, I’m off now.’ And I was like, ‘But I’ve hardly seen you!’ and y’know I was a bit well shell-shocked actually.”
In general, people felt that having some training in employing PAs would help them to manage difficult situations like this, and to feel more confident in obtaining the quality of care they needed. Good relationships with PAs were key to good quality of care. A high turnover of care workers had a negative effect on maintaining meaningful relationships, as one person described:
“It’s OK if I know which one I have. Sometimes I click with someone, know which number to phone, then about a week after he says, ‘Oh, I’m leaving, it’ll be our last day the next day’.”
Such poor continuity can prevent people from developing trust and confidence in their PAs.
Many people embrace the principles and values of personalisation but people with weaker social support networks are less likely to achieve the levels of independence that they wish to. Managing personal budgets and taking on the role of employer of PAs can feel stressful without adequate support and training.
The individuals we spoke to were all accessing at least one voluntary-sector social group; many expressed concern for other people with learning disabilities who had stopped attending these groups. It is important that future studies capture the voices of the most isolated and vulnerable individuals in order to better understand what impact social care reforms have on their lives.
- Many people aspire to greater independence in their lives, but independence has different meanings for different people.
- Strong networks of social support help people live as independently as they wish to.
- Closure of specialist services has meant some people with learning disabilities have lost contact with friends.
- Managing PAs can be challenging for people with learning disabilities; training and support is needed to help people take on an employer role.
- Relationships with PAs can be an important source of social support; however, a high turnover of PAs meant this was not always the case.
Hamilton, L.G., Mesa, S., Hayward, E., Price, R., & Bright, G. (2017). ‘There’s a lot of places I’d like to go and things I’d like to do’: The daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom. Disability & Society, 32(3), 287-307.
- Department of Health (2009). Valuing people now. A new three-year strategy for people with learning disabilities. London: HMSO.
- Sims, D., & Gulyurtlu, S. (2014). A scoping review of personalisation in the UK: Approaches to social work and people with learning disabilities. Health and Social Care in the Community, 22(1), 13-21.
- Abbott, D., & Marriot, D. (2013). Money, finance and the personalisation agenda for people with learning disabilities in the UK: Some emerging issues. British Journal of Learning Disabilities, 41 (2), 106-113.
- Sully, A. & Bowen, R. (2012). Social care in crisis – The need for reform: The Learning Disability Coalition Annual Survey 2012. London: Learning Disability Coalition.
Lorna Hamilton is a Senior Lecturer in the School of Psychological and Social Sciences, York St John University.