To help avoid future abuse scandals such as that of Winterbourne View, the Social Care Institute for Excellence has produced resources to help staff, managers and commissioners improve the services available for vulnerable adults
Lisa is 40 and lives in Surrey. She has a history of challenging behaviour, is deaf and severely autistic. She lives in a house run by the National Autistic Society, where 10 adults live in two five-bed units. The house is carefully designed, with large living areas and gardens to give individuals plenty of space.
The care environment was designed using the SPELL framework, which often forms the basis of autism-specific staff training. SPELL stands for: structure; positive interactions; empathetic understanding; low arousal environment; and links with parents and professionals.
Like each person living in the house, Lisa has an individual behaviour plan, which enables care workers to understand what makes her react in particular ways and to keep track of what triggers types of behaviour.
As care staff have developed a better understanding of Lisa’s needs and behaviour patterns, she has learned to use a language of signs and symbols to communicate her needs and wishes to the people caring for her.
This has made a significant difference to Lisa’s well-being and her ability to socialise, make choices and express preferences.
Lisa’s story shows how important it is to employ well-trained staff with specialist knowledge to care for people with learning disabilities, particularly if they display challenging behaviour. But the recent BBC Panorama investigation into the routine abuse by care workers of adults with learning disabilities at the Winterbourne View private hospital in Bristol showed what can happen behind closed doors. Panorama’s undercover reporter found evidence of deliberate and sustained physical and verbal abuse of adults in a vulnerable situation by low-paid, poorly trained care staff.
After the programme aired in May, the government announced that inspectors from the Care Quality Commission would be sent into 150 residential centres for adults in England to carry out spot checks. Paul Burstow, the care services minister, also announced a review of all 30 centres run by Castlebeck, the company that ran Winterbourne View.
The case raised many uncomfortable questions for policymakers, commissioners and care providers. Long-term institutional care for adults with autism and learning disabilities is assumed to be a thing of the past. But, as NHS long-stay hospitals have closed, equivalent units run by private companies – care homes in all but name – have taken their place. People with challenging behaviour often end up in these long-stay units, where their behaviour may be misunderstood and care is not always tailored to their needs. This is the context in which abuse can take place. However, research highlights a number of key lessons that can be learned to improve practice and reduce the risk of abuse or neglect.
Challenging behaviour can be one of the most difficult aspects of caring for someone with severe learning disabilities or autism. It can cause a range of problems, including aggression directed at other people, damage to property and self-harm. But, as Lisa’s story shows, there is much that care staff, whether in residential care or community settings, can learn to increase their skills and enable them to care for people in a way that recognises their needs as individuals and respects their rights as human beings.
Scie has a number of evidence-based resources to help with this, including two new Social Care TV programmes. The films show how services can be improved for people with learning disabilities through more informed working practices, better communication and positive environments, as well as a willingness to assist people to live independently.
Recent guidelines for supporting people with learning disabilities who are at risk of abuse, produced by the Royal College of Psychiatrists, British Psychological Society and Royal College of Speech Therapists, shows that good services are about relationships, communication and the interaction between the individual and the environment in which he or she lives. This requires care staff to tailor what they do to individual needs, rather than imposing a one-size-fits-all approach and expecting it to work.
Jim Mansell, emeritus professor of learning disability at the University of Kent’s Tizard Centre, describes it this way: “Person-centred approaches – not just person-centred planning but person-centred ways of working – are absolutely central. And the services we design for people whose behaviour presents a challenge need to be tailored to each individual.”
The evidence of what works best is clear; it now urgently needs to be implemented, says Mansell. “We don’t need more reports, and we don’t need more policy statements. We need people to actually develop individual services. If we started doing that, several things would happen.
“Individuals would have a better life; we’d begin to build expertise about how to do this and how to sustain it. And we’d stop wasting so much money on poor quality placements that aren’t really part of the solution.”
Scie also publishes a range of resources to help care staff and managers improve services for adults with disabilities and older people.
The guide to dignity in care (see Further Information) discusses how to see each person receiving care as an individual and how to respect their own space and way of life. It also sets out the eight main factors that have an impact on whether people are treated with dignity in care settings. These include issues such as choice and control, communication and pain management.
Another important factor is overeating and nutritional care, which involves recording and acting on the dietary needs and preferences of each person, plus giving people enough time to eat and providing discreet assistance where needed.
Guidance is also available on the use of anti-psychotic medication for people with dementia. Evidence tells us these drugs are over-prescribed in care settings for people with dementia, and that a substantial reduction in their use, together with the wider adoption of alternative types of support, would help to maximise quality of life for people with dementia and their carers. Joint guidelines produced by Scie and the National Institute for Health and Clinical Excellence state: “People with dementia should receive anti-psychotic medication only when they really need it.”
Taken together, these and other resources offer staff, managers and commissioners guidance on translating the best available knowledge into real improvements for people who use social care services.
KEY GUIDANCE MESSAGES
● People with challenging behaviour should not be excluded from services.
● Challenging behaviour is often rooted in difficulties with communication. The behaviour may be used by people with learning disabilities or autism when they are unable to communicate or when their carers do not understand what they want. Finding effective ways to communicate is key to improving services.
● Consistent support from services, and from everyone who works with a particular individual, is vital. Knowing someone very well allows care staff to personalise the support they offer and avoid triggers for challenging behaviour.
● Environmental factors are often important in reducing incidences of challenging behaviour.
● Working effectively with individuals can reduce the need for intensive staffing and expensive placements.
Social Care TV looks at how to improve services and encourage independent living for people with learning disabilities
At a glance summary: Challenging behaviour: a guide for family carers on getting the right support
Find practical guidance: Dignity in care
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This article is published in the 21 July 2011 edition of Community Care under the headline “Providing individual services to difficult vulnerable adults”