Care against the odds

Case notes

Field: Learning difficulties.

Location: Isle of Wight.

Client: Helena Swift has physical disabilities and a profound learning disability. She lives with her mother, Nancy, stepfather, Duncan, and three siblings.

Case history: Helena spent a short time in care as a younger child but has mostly lived at home. She has no verbal communication. She is unable to sit up and requires two people to help her move. Her mother, who experienced domestic violence in her first marriage, has mental health problems and has been known to abuse alcohol. Children’s services had been working closely with Helena and her family and were providing services, including respite and home care at the time her case was transferred to the adult learning disability team. At the time of transfer a range of concerns were already identified.

Dilemma: Although suspecting sexual abuse no concrete evidence could be found and every legal attempt to move Helena was thwarted.

Risk factor: In her home Helena endured some neglect and with her family under immense pressure her vulnerability increased.

Outcome: Helena continues to live at home but with increased services and monitoring.

The transition from childhood to adulthood can be a rough passage for even the best prepared families. It is increasingly recognised as a critical period for people with profound learning difficulties. As you change from child to adult so do the laws that supposedly protect you – as the case of Helena Swift, a young woman with profound learning difficulties on the verge of adulthood, shows.

Staff at Helena’s respite placement discovered bruising on her hands and rang the family, who were unhappy at the inconclusive investigation that followed.

“It was probably at that point,” recalls transition care manager Sue Simpson, “that communication with the family began to break down. The stepfather, in particular, became very volatile. However, at the time he was basically caring for Helena because her mother was struggling to cope, being on anti-depressants and turning to alcohol.”

“There were a lot of pressures on the family,” agrees team manager Daron Perkins. “Their housing was poor – there wasn’t a bath. They had been offered alternatives but had refused them.” They had been living in temporary accommodation for many years.

Helena’s school had also been raising concerns around neglect over her appearance. They also regularly suggested that Helena seemed depressed. When she was due to go home she would appear to become distressed. “The home carers reported back things such as no food being available for Helena, parents not being around, poor environment, they felt the whole situation was neglectful,” says Simpson. Indeed, had Helena been younger than 17, children’s services would have considered a care order.

So the adult learning difficulties team explored other legal powers. “Plans for guardianship fell through with the psychologist’s assessment that Helena was not ‘seriously irresponsible’,” says Simpson. An application was then made for “declaratory relief” – a common law doctrine which, if the situation allows, the High Court can give reassurance that the best interests of the person requires an intervention. “This is an unusual approach but one that we considered worth pursuing at that time given the concerns,” says Perkins. “However, the family’s rapport with us began improving which obviated the immediate need to pursue the application. They were able to demonstrate that they were taking measures to ensure that Helena’s needs were being met effectively.”

Simpson continues: “The family’s view might well have been we’ve left children’s services, let’s leave all that behind and take a fresh approach – although we made it clear that we were aware of the concerns and would continue to monitor these but we wanted to be balanced. I also carried out a carer’s assessment to support the family as well.”

However, hopes of improvement were shot down. Helena was being bathed at a day centre twice a week. Here staff discovered bruising around her vagina, suggesting sexual abuse. Helena was moved into a place of safety pending an investigation. The police surgeon found that her hymen was torn.

“There was no evidence to link the bruising to abuse. Swabs were taken but results would take 90 days to arrive. We had no evidence to prevent her from going home. But we all felt anxious and uneasy. Legally there was insufficient evidence upon which to found an application to the High Court for interim declaratory relief.” Following investigation information came to light which gave a reasonable explanation for the bruising.

Simpson met the family: “We felt they were struggling to provide the care that Helena needs and our preference was to continue to work with them but perhaps we could have a shared care arrangement – with Helena spending two nights a week with the family,” she says. But they refused, preferring Helena to stay at home.

A protection plan is now in place. Two carers go in weekday mornings to get Helena up, washed and cleaned and ready for day services. Every other weekend Helena has respite care. On her weekends at home there are two hours of carer support on each Saturday and Sunday. Monthly adult protection meetings are held with all agencies involved in her care, and Simpson receives weekly reports from all available sources.

“We were very clear with the family. We didn’t sidestep the concerns we raised, but we needed to strike a balance. If we went in all guns blazing we know that the carers would be ejected from the home and would lose all our monitoring capabilities.” CC

Arguments for risk

• Despite strong suspicions no evidence could be found of sexual abuse and Helena needed to be returned to her family. However, with increased services, regular daily contact is assured and monitoring of the situation can take place.
• The family had in the past resented social work input as they felt it meant that loss of control of the family. It is possible that the family could shut out all services in a bid to regain control. This would leave Helena exceptionally vulnerable. So working with the family in an open and balanced way has meant that services needed are at least being accessed. This also means that the family, if they were abusing Helena, know that they are being monitored.
• A protection plan is in place – signed up by all agencies that are working with Helena. That all these agencies meet monthly and send in weekly reports emphasises that every caution is being taken to ensure Helena’s safety.

Arguments against risk

• Although a variety of legal approaches have failed, the fact that so many have been tried suggests the seriousness with which the workers view Helena’s situation. Unable to communicate or move herself, she is highly vulnerable and by returning her home they could simply be returning her to further abuse.
• Neglect is abuse. Reports abound about the “neglectful situation”, according to Simpson: “Most issues raised tend to be around neglect – Helena found to be cold in bed in the morning, inadequate clothing, bed wet, stepfather not being co-operative communicatively, mother being distant,” she says.
• The other children are, according to Perkins, “very independent for their age. They are generally left to sort themselves out. Which they do.” However, Helena cannot.
• The stepfather now realises that he shouldn’t be responsible for Helena’s personal care needs – not least as this leaves him open to accusation.

Independent comment

Adult protection seems an infinitely more complex problem than child protection although the bottom line remains the same: abuse is abuse, no matter who does it to whom; or how old the people being abused are, writes Kathryn Stone. 

It was interesting that no mention was made of using section 127 (2) of the Mental Health Act 1983 which criminalises such neglect, since it was this law that brought the former Longcare residential care home owners to trial. (In 1996 the owners and two former workers of two residential care homes for people with learning difficulties in Buckinghamshire were charged with neglect. Subsequently, the council, in October 2003, settled out of court with those affected by the abuse for just over £1m, accepting failings in its registration and inspection system). 

Thankfully, Daron Perkins and Sue Simpson kept going. They kept trying to find ways to support Helena and her family. I would have been interested to know Helena’s view. What attempts have been made to find out what she wants next or where she wants her future to be? Is an advocate involved? How is Helena supported to communicate her view? It seems that for now Helena is protected from further unexplained bruising. Thankfully the workers seem to have the drive and commitment to make sure things improve for her.  Kathryn Stone is director of Voice UK, a national charity working with people with learning difficulties who have been abused or are the victims of crime, and their families

Practitioner: Daron Perkins, team manager and Sue Simpson, transition care manager.