News

This week's multi-disciplinary panel offer views on a case involving disagreement over the future of a woman with learning difficulties.

Case study

The names of all service users mentioned in this article have been changed.

Situation: Louise Sands is a 20-year-old white female with learning difficulties. She has spent the past three years away at a boarding college. During term breaks she comes home to her mother and stepfather. Her father left home two weeks after she was born and has no contact with her. The social services department are planning for Sands's future.

Problem: Sands's social worker (and her managers) believe that she is competent enough to return to her home city and live with a degree of independence - possibly in supported lodgings. However, Sands's highly vocal parents do not agree. They doubt her ability to cope, and point to two recent incidents (Sands absconded from her college, and used a whole bottle of shampoo during one unsupervised shower) to confirm their fears. They would prefer her to be in a registered care home with 24-hour support. They also believe she would most benefit from a therapeutic, working rural setting, preferably based on Rudolf Steiner principles. Both parents are committed Christians. The social services department believes that Sands would prefer to return home and strongly suspects her parents have been "coaching" Sands to express their preference, not hers. It believes that a care home placement would be detrimental to Sands's independence and development. The parents believe the department is biased against such Christian and (what they say the social workers disparagingly refer to as) "hippy" placements.

Panel responses

Louise Lewis
In order to explore some of the issues in this case scenario I will focus on Louise Sands in relation to clinical practice. The first thing that struck me was Sands's lack of voice; the tensions are primarily between her family and social services. There is no denying the vital contribution that families make and there is a need for carers to feel confident that public services will provide reliable support.¹ However, this needs to be balanced against a person-centred approach that should place Sands at the centre of decisions made about her life.

In order for Sands to make informed choices she may benefit from a multi-disciplinary assessment to identify her strengths and weaknesses. From this, practice could focus on how to work jointly with her to enable her to make decisions. This could involve networking and mapping relationships, choosing a lifestyle, city versus rural living, life story work using photos and other media, and visits.

The recent incidents regarding Sands's apparent inability to cope can be viewed positively. There could be a simple explanation for the shampoo; it could have dropped in the shower. Equally, Louise leaving the college could be a demonstration of her abilities to make independent decisions and manage autonomously within her local community.

Practitioners need to remember that risk-free living does not exist. Frequently, interventions focus on how we can best ensure that people are safe. In doing so we may neglect to consider what individuals require to be happy.² Managing this paradox may require a fundamental shift in professional thinking. It is essential to consider ethical issues arising from judgements about perceived quality of life. This issue is at the heart of this case study with both parents and services having made value judgements about what they believe is best for Sands. Practitioners need to have opportunities to reflect on their personal perspectives and how these impact on practice. Effective clinical supervision can enable individuals to develop their roles to become more supportive and empowering.

¹ Department of Health, Valuing People, HMSO, 2001

² M Smull, Revisiting Choice, Unpublished paper, 1995

Mike MacCallam
What concerns me about this scenario is that nobody seems to have asked Sands what she wants to do and where she wants to live. And who with? There seem to be a lot of assumptions being made based on what people believe or suspect, and little evidence to support the views of either the social workers or the parents.

It is apparent that there is little attempt to work together with the family,  and it seems as if Sands may be the unwilling victim in a power struggle between the social workers and the parents over what they think is best. Ultimately, however, neither preference will be in Sands's best interests if she has had no choice, no voice, and no opportunity to take some control of her life.

The views of the parents and the social worker are not as important as finding out what Sands wants to do for herself. Is she allowed to have hopes and dreams of her own for her own future?   

It is alarming to read how the social services department is planning for Sands's future. Why isn't Sands planning for her own future? How many of us would like our lives, or those of our children, to be planned by a local government department?

The social services department and the parents should be encouraged to put aside their differences and acknowledge their respective responsibilities to Sands. The basis of any decision making about her future must be rooted in a process that allows her the freedom and opportunity to express her own views and to be supported in her choices. This may mean the social services department and the parents need to let go of the control that they exert over Sands and undertake an honest review of their relationship with her and each other. It may also mean adopting more creative solutions to supporting individuals and a change in practice by the social services department. Why does Sands need a social worker?

Finally, one Department of Health report offers lots of practical advice about supporting family members, and may be a useful reference for the social work department for building bridges with the parents in this case.¹

¹ C Ward, Family Matters - Counting Families In, Department of Health, 2001, at www.doh.gov.uk/learningdisabilities/familymatters.pdf  

User view

We were very upset to read about what is happening to Louise Sands. As people with learning difficulties, we know what it is like to be in her situation where everyone has an opinion about what is best for your life, but your opinion is ignored. We have confidence in her and believe that she has the right to do what she wants. This includes taking risks like everybody else. Because we have learning difficulties we often have to prove ourselves even more than people without learning difficulties. We are not allowed to make any mistakes or learn from them. Louise made a harmless mistake washing her hair. Maybe, she ran away from college after this because she was scared she would get into trouble for failing. This makes us really sad.

We question whether Louise's parents are caring or controlling? There is a fine line between the two. Part of all parents' job is to worry about their kids. But the other part of their job is to let us take risks like everybody else. They are making too much fuss over the shampoo story, which is probably already very embarrassing to Louise. In one way they expect too much of her, but in another they don't have enough trust and expect too little from her.

We think that social services are, for once, thinking about what is best for Louise. She has the right to live where she wants to and have the support to do this. Why haven't they talked to her parents about other ways that a person who needs 24-hour support can live? What about direct payments or 24-hour support in your own flat? Maybe Louise could start with 24-hour support and reduce the hours as she gets used to living on her own?

If they really think that Louise is being coached by her parents, social services should ask her if she wants an independent advocate or support from a self-advocacy group. Unfortunately, social services have shot themselves in the foot in terms of the parents being open to their ideas and making it easier for Louise. By making comments about the family's religious beliefs, they have added to the tension. If Louise really wants to live in a religious community or with other people with learning difficulties, she has the right to do this. The question is we don't know what Louise wants in life until she has someone independent to talk to her about it! That's where it should be starting.

Pasquelina Cerrone, Colin Gear and Kathleen Franklin all work for learning difficulties group Milton Keynes People First.