Practice Panel: Learning difficulties team, Bath and North East Somerset

CASE STUDY

The names of the service user  and her family have been changed

SITUATION: Michelle Adams is 27 years old and has learning difficulties. She is strapped into an electric wheelchair (once released her arms flail uncontrollably) but can use her fingers to move the chair. She has speech but it can be very difficult to understand. She lives with her parents who devote most of their private time to the church. Michelle's mother, in particular, feels that Michelle was a punishment from God in response to which she is dedicating her life to the church to seek forgiveness. 
PROBLEM: Michelle has become involved with an advocate based at a day service she has attended for the past year. She has also joined a self-advocacy group. She has started to learn about independence and choice. While discussing sex and sexuality, Michelle became upset. Pictures demonstrating sexual acts caused her to be very aggressive, particularly one depicting oral sex. Working with Michelle sensitively, an advocate, the day service manager and member of the self-advocacy group concluded that Michelle was disclosing that she had been sexually assaulted by a senior member of her parents' church. The parents were shocked that Michelle had been attending sex and sexuality "classes" and were outraged at the unsubstantiated allegations about a respected and much loved man whom they counted as a dear friend, and who had died the year before and could not defend his name. The parents now refuse to let Michelle attend the day service.

Panel Responses
Hannah Fordham
Although Michelle does not appear to be in immediate danger of abuse we need to ensure that the vulnerable adult protocol was followed. Further investigation is likely to be needed and may involve the police and other agencies. The disclosure may have implications for other church members.

Social services has a duty of care for Michelle and can assess her needs. A planning meeting would be useful in which Michelle's wishes and feelings need to be central and a person-centred approach could be taken. This will establish if Michelle would like to return to the day services, pursue alternative accommodation and question how she wants to spend her time.

As the White Paper Valuing People highlights, people with learning difficulties have the right to fulfilling and varied lives within the community. Any involvement with Michelle would also need to take account of her individual communication needs. Michelle appears to have developed a good working relationship with her advocate and this should continue. Advocacy enables people to put forward their views and play an active part in planning their future services.

Michelle could receive a variety of support including psychology, psychiatry, support groups or victim support in connection with the abuse. Consideration should also be given to the impact that Michelle's mother's views of disability are having on Michelle. We would take particular care to avoid a stigmatising approach to this situation. Michelle's family would be offered carer's assessments. It is essential that we re-establish contact and trust with Michelle's family and direct them to carer organisations for support. They may find the ending of day care provision and their increased caring responsibilities difficult to manage.

The reaction of Michelle's family indicates that lessons can be learned to ensure that greater sensitivity is taken at the day service. While confidentiality needs to be respected, day care services could be more open with family and carers by sharing activity programmes and seeking feedback. Finally, staff at the day services should be aware of the impact of using material showing sexual acts and need to consider how information used might be acted upon.

Sheena Jones
From a community learning difficulties team perspective, the physical and psychological health, safety and general well-being of Michelle is of paramount importance.

The first necessary step must be to initiate a vulnerable adults meeting because of the nature of the disclosure made by Michelle. Any contact before this happens may lead to contamination of evidence in what might result in legal proceedings. In informing Michelle's parents of her disclosure the day centre staff have probably acted incorrectly and not in accordance with a vulnerable adult policy and guidelines. It is also questionable whether the centre was following any sexual health guidelines when introducing pictures of oral sex into a group which is described as a self-advocacy group.

It is vital that Michelle has the best opportunity to communicate her thoughts and feelings, and an independent advocate along with communication support and advice is crucial. This may involve a speech and language therapist from a community learning difficulties team who would be able to offer assessment and ongoing support.

At a suitable time there may be involvement from other team members (psychologist, psychiatrist, occupational therapist, physiotherapist or social worker) to offer Michelle support for her physical, psychological and social needs. This support would need to be dovetailed into any vulnerable adult and legal proceedings.

Any team input would need to be co-ordinated and approached with great sensitivity. It will be essential to maintain contact with all those involved in Michelle's support and, if appropriate, to work with Michelle's parents to try and build confidence and communication. It might also be appropriate to involve outside agencies specialising in working with people with learning difficulties who have been abused, such as Respond (www.respond.org.uk) or Voice UK (www.voiceuk.org.uk).

In the long term it might be a good idea to offer Michelle and her parents family therapy to help them address emotional conflicts. Issues that need to be raised at managerial level include the implementation of the local vulnerable adults policy, and guidelines for work around sexual health.

User View
This must be very difficult for Michelle. We think that Michelle's parents were wrong to stop her attending the day service. Michelle is 27 years old and is not a child anymore and has the right to attend the services that she wants to, write Keith Taylor and Colin Waters.

Michelle's parents are denying her access to information and options to help her make choices about her life by withdrawing her from the day care service. Michelle has a right to know about sex and sexuality issues and Michelle also has the right to attend the self-advocacy group if that is her wish. 

Michelle must have felt comfortable and safe at the day service to be able to tell people about what happened to her. It must also have been frightening for Michelle to go through what she has been through, not least because she is "strapped" into her chair and has difficulty with her speech and didn't have anyone to tell.

It must be really hard for Michelle because her parents are almost telling her that she is wrong about what happened. This must be causing problems for Michelle and her relationship with her parents.

She must be feeling extremely upset that her parents do not want to know about what happened or, worse, don't believe her. And now that she has been taken out of the day service she might feel that she has nobody to talk to about it.  

We think Michelle needs somebody else to talk to about what happened so that she can discuss how she feels. Michelle is a vulnerable person and her parents cannot ignore this and should involve the police and social services. She needs a lot of support to help her through this issue. 

We would also like to know if the day care service has contacted anybody else other than Michelle's parents about what happened to their daughter? Just because the person who is alleged to have abused her is dead does not mean that the incident did not happen. 

Another question that we would ask is that if this happened to Michelle, has it happened to anyone else? If it has also happened at the church and by a "respected" church member, the church has a duty to investigate how the abuse of Michelle was allowed to happen. If they do not do this they are saying that it is ok for other people to abuse people with learning difficulties. 

Keith Taylor and Colin Waters are members of Milton Keynes People First, a self-advocacy group for people with learning difficulties