Let Her Tell Her Story

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.


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

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

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

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.

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

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

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