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

Situation: Juliette Barnes is 20 with profound physical disabilities - she has no mobility and cannot communicate verbally. She lives at home with her sister, Sonia, 19, and their mother, Margaret, 43. Following her divorce from the children's father Margaret has had a succession of failed  relationships, for which she largely blames Juliette. Apart from the disabled children's service, the family were also well known to social services because of concerns about poor parenting skills and because Sonia's behavioural difficulties resulted in school expulsions and petty crime.
Problem: Home carers who regularly attend to assist Juliette were concerned about the care being provided. They felt that Juliette's needs were being neglected. It seemed that Margaret would not take advice about how to handle Juliette safely, and who had begun to show signs of increasing distress each time the carers turned up. They would find Juliette where they last left her, she would not have been assisted to the toilet and find meals that had been left had not been given to Juliette. There was also concern that Sonia seemed to be in charge of the house and was ordering her mother about and being verbally aggressive towards her and Juliette. They also suspected that Sonia's friends were using the house to store stolen goods. When more support for Juliette is suggested both Margaret and Sonia angrily refuse saying that social services interfere enough as it is.

PANEL RESPONSES

Kathy Richardson
There is much to offer Juliette and great improvements to be made in her quality of life. It is not acceptable for this young woman to have so little power or influence in so many crucial areas of her life; our first priority is to help her to gain some control.

Her means of communication must be given urgent consideration. Working with a community speech and language therapist, we would explore the use of alternatives to verbal communication - such as software-based systems and infra-red controls.

We would arrange for an advocate or support worker to be allocated to Juliette, whose role would be to ensure that her attempts at communication were given due attention by her family, carers and all service providers. Juliette would then be able to have discussions about her current and future living arrangements, and to make and communicate decisions regarding any changes that she wants.

Once we have discovered a successful means for Juliette to make her needs and wishes known, we could ensure that the same technology was applied in order for her to be able to try out a powered wheelchair - and possibly environmental controls too.

As well as the speech and language therapist and the occupational therapist being involved, we could explore the difficulties associated with her eating and drinking. There are products on the market which enable people with severe physical disabilities to eat and drink with greater independence (for example the "Neater Eater") and these might be an option for Juliette. Whether or not this works for her, Juliette needs a highly structured care plan, which includes carers from outside the family assisting her to eat and drink.

Within the care plan, it is essential that there is a detailed moving and handling plan and that everyone follows it. The risk of injury to Juliette and to anyone assisting her to move is critical within the current arrangements. It is quite possible that Margaret, like so many other parents of disabled children, has long-standing back injuries associated with the way she has been helping Juliette.

Annette Whittingham
It is apparent that because of the family's background they find it difficult to work with or trust professionals. Any single parent of a disabled child in need of support from social services needs to be able to take time to build up relationships otherwise they could become overwhelmed and rush in to making judgements about the people trying to offer support and advice.

The caseworker needs to see the situation from all sides and engage with the family members to build up trust while undertaking a systematic approach to the situation and responding swiftly and effectively to ensure Juliette's safety and well-being. The worker would need to undertake a re-assessment of Juliette's needs and level of risk, and offer separate carers' assessments to Margaret and Sonia to establish their need for support. Not all carers are aware of all the services that are available to them or recognise themselves as carers who are entitled to help and support.

Also, does the family have financial difficulties and require benefits advice? Poverty can affect family life and the skills needed in parenting. Have the difficulties arisen as a result of misunderstanding rather than poor parenting skills or a combination of both? Does Margaret fully understand Juliette's care plan and moving and handling programme? Have day care and respite services been explained? This would remove some of the family's pressures while providing an opportunity to monitor the situation.

The case worker would need to find out from Juliette her needs and view of the situation and this might be possible using specialist communication equipment. How does Juliette communicate her wishes to her family and carers?

Is Margaret's permissiveness and inability to discipline Sonia a result of her self-perception and failed relationships and is Sonia's home life contributing to the suggestion of her offending? A protection of vulnerable adults meeting would need to look at different ways of working with each member of the family and regular monitoring of the situation.

A referral to the disability resource team for advice on mobility and communication products for Juliette may prove to be the key to the family beginning to accept the involvement of professional help other than social services.

USER VIEW
The major problem is that we don't really know what Juliette is going through, or how she feels about her present situation, writes Simon Heng. 

How does Juliette communicate at present? Do her relatives "translate" for her? If they do, and they are suspected of abuse or neglect, can we trust their "translation"? Is she able to read? Is she able to use any kind of communication device? 

I've known a number of people who are unable to speak but who have managed to communicate effectively with a variety of tools. These include a picture board, which depicts icons which someone can use to indicate simple concepts, to a word board, which is literally what it says it is, a large board containing a grid filled with commonly used words and the alphabet. Communication aids go from this to special input devices attached to a voice synthesiser, such as Stephen Hawking uses. Many people have enough voluntary control over some part of their body to enable them to use devices like this. 

The sooner attempts are made to help her develop a means of communication, the sooner she will be able to tell people how she is being treated and how she feels. 

If Juliette were a child, she would be a candidate for the "at risk" register, with all the measures that offers. As far as I know, there is no such equivalent for vulnerable adults: maybe there should be. The recently introduced Protection of Vulnerable Adults scheme, as far as I understand it, can only identify paid care staff who have been implicated in abuse or neglect, meaning that people who are looked after by informal carers aren't protected by this. Physically dependent upon other people, and unable to communicate effectively, even if she isn't being deliberately abused, Juliette is entitled to the protection offered by policies devised in the wake of the Department of Health document No Secrets: Guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse.

Published in 2000, No Secrets instructs local agencies to develop ways of protecting people like Juliette. By now, her local agencies should be well advanced in implementing their vulnerable adults' protection strategy, including information and training (or both) for front-line staff about how they should address suspected abuse or negligence. 

Simon Heng is a regular Community Care columnist and a disabled service user