Deafblind people, especially those with congenital deafblindness can be vulnerable to abuse. Why is this and how can deafblind people be protected? Steve Kiekopf, Policy and Quality Officer, explains how Sense addresses this sensitive issue.

No one likes to think that vulnerable people, especially deafblind people may be at risk of abuse. In fact, it sometimes seems that society would prefer to look the other way and pretend that it doesn’t happen. And yet sadly, experience has shown that abuse does take place and that this is something that all social care organisations need to be vigilant about. This article focuses on the needs of people with congenital deafblindness, many of whom have additional disabilities such as a learning difficulty.

Sense takes the issue of protecting deafblind people from abuse extremely seriously. All staff receive training in this sensitive area and are regularly supervised and appraised. We follow an Adult Protection Policy and have established a Protection Committee, the first of its sort in the voluntary sector. Our goal is to always provide as safe an environment as possible and to reduce the deafblind individual’s vulnerability to abuse so that they can develop and flourish.

What do we mean by abuse?

The Department of Health describes the main types of abuse in its report `No Secrets’ (2001):

• Physical – including hitting, pushing, misuse of medication and inappropriate sanctions.
• Psychological – including emotional abuse, deprivation of contact and intimidation.
• Sexual – including rape and sexual assault or sexual acts to which the vulnerable adult has not consented.
• Financial – including theft and fraud.
• Neglect – including neglecting physical and medical care needs.
• Discriminatory abuse – including racism, sexism and other forms of harassment.

As well as being extremely vigilant about these types of abuse, Sense uses a wider definition of abuse than most organisations. This includes any action of a staff member or other that impacts on the deafblind person with the potential to cause harm. This can range from a person being left unchanged for any period, We are also vigilant about other forms of neglect, such as someone being left in food-stained clothes after meals for unacceptable periods of time.

Why are deafblind people especially vulnerable?

Sighted hearing children and adults use their senses to find out about their world. They learn through play and interactions with others and develop knowledge of acceptable morals and rights – including the behaviour of others and themselves. And as they get older they usually have the physical and cognitive skills to defend themselves and disclose abuse to a third party.

But for someone who has been born deafblind this is much more difficult. Pamela Cooke (1999) from the Ann Craft Trust identified many reasons why disabled children and adults are more vulnerable to abuse. These include:

• Society often places a negative social value on disabled people; and it sometimes doesn’t seem to believe that abuse of disabled people actually happens. Many disabled people have low self-esteem. 
• Some disabled people have limited communication.  
• Individuals may have limited opportunities for developing knowledge of sexual and personal relationships. Many don’t receive sex education.  
• They may be dependent on a range of people for their basic and often intimate care needs. Some people may be isolated in segregated care.
• Some individuals may show innocence and unguarded displays of affection. 
• Some people’s behaviour may be modified by medication.

The vulnerability of deafblind people will often include the above factors. In addition, dual sensory impairment will have a profound effect on communication, cognitive understanding, mobility and the development of relationships - which will further compound an individual’s vulnerability.  As the child grows, information will be restricted and the learning of acceptable behaviour of others will often be distorted or misunderstood.

Also the individual may have limited or no formal communication and so may be viewed by a potential abuser as a safe victim who will be unable to tell anyone else what has happened.

How can deafblind people be protected from abuse?

Touch and body awareness

For many deafblind people the use of touch – including sensory stimulation – is one of the most important routes to learning. In addition, many multiply sensory impaired (MSI) children are dependent on others for personal care. They may not have the opportunity to learn about personal modesty and what is inappropriate. The child develops an acceptance of others having access to their bodies often into adulthood. This can mean that neglectful practices may become accepted by the child as normal.

Practice recommendation

It is essential the person be supported to become as self-managing in personal care as they are able. Where this is not possible, teaching of acceptable and unacceptable touch must be provided.

In instances of physical abuse, if the person is responded to with rough handling or corporal punishment by a carer, their perception will be that this is the norm. Physical and sexual abuse may be experienced as an unpleasant interaction but also for a deafblind person as a stimulating tactile experience – although clearly unacceptable.

For any teenager puberty can be a difficult time. Their body is undergoing both physical and physiological changes. A non-disabled child is able to learn about sex through a range of sources and to develop and discriminate about appropriate self-stimulation and inappropriate behaviour of others.

The deafblind individual may have little understanding of sexual feelings or understand how these feelings can be dealt with. This may result in frustration and inappropriate experiments or masturbation techniques, some of which may be physically damaging or leave the person open to abuse from others.

Practice recommendations

Where the individual wishes to sexually self stimulate (masturbate), or become further sexually active they are given appropriate sex education regarding privacy and ‘sexual protocols’ to reduce their vulnerability to abuse.

Where the deafblind person exhibits self injurious behaviour, or is prone to falling, careful and accurate recording should be completed to reduce potential abusers using these injuries to mask evidence of physical abuse.

Anticipation

Someone with a dual sensory impairment will often have a limited understanding of time and what is about to happen. They may be unaware of others around them until they receive physical contact.

Deafblind individuals develop a better ability to anticipate activities if consistent approaches are used so that they can develop expectations of how they should be treated. Without this, for example, an individual might accept being left for long periods in soiled clothing as normal.  

Practice Recommendations

Staff should ensure at all times that high standards of care are provided consistently and recognise when the person needs, or communicates that they require, support.

Using a consistent approach, the congenitally deafblind person may be able to recognise if an anticipated event does not follow the ‘learned’ consistent approach. They may realise that something is wrong and refuse the interaction.

Language and communication

For any deafblind person the ability to communicate with others and therefore have control of their world is fundamental. They need to learn and be able to communicate choices and preferences in a manner that is meaningful to them, and that is understood, is essential.  

Some individuals may only have a limited vocabulary and use other forms of communication - such as objects of reference or pictures. Even where the person is able to communicate that abuse has occurred, they may not be able to provide more information than this.

Giving people who are deafblind communication skills relating to control - for example `No’, `like’, `don’t like’, `want’, `finish’, `go away’ etc and using tactile personal symbols gives the individual a way of asking for a person and having some control over who supports them. It also means they may have a way of saying they don’t like/want a person - and thus disclosing abuse.

Practice recommendations

Where the person has the ability to understand and learn they should be supported to acquire vocabulary that will enable them to disclose abusive practices.

Whenever possible individuals should be given a communication method that enables them to convey ‘NO’ when they are faced with a situation they are unhappy with.

Vision, hearing and mobility

If someone has been born with impaired vision and hearing this will restrict what they can learn about the behaviour of others and society’s norms for what is acceptable. For example the individual may find it hard to differentiate between people known to them and strangers.  

Additional physical difficulties can affect learning. Through restricted mobility skills and inability to explore their surrounding environment increases vulnerability. They will be unable to ‘read’ signs, facial expressions and the body language of a potential abuser that an attack is imminent and move away from an abuser or defend themselves from possible assault.

Practice recommendation

Intervention to enable greater mobility and use of any residual vision and hearing will increase the level of information someone can assimilate, but also enable the person to move away from danger and if necessary defend themselves from physical attacks.

Challenging Behaviour

Various studies have suggested that there is a significant correlation between incidents of challenging behaviour and physical abuse.  Challenging behaviour is often an alternative way for the deafblind person to communicate, either due to a lack of a formal communication method and/or frustration at a particular situation or where other signals the person has given have not been understood or recognised.

As discussed earlier, for some individuals, physical pain may be regarded as another interesting and enjoyable bodily sensation and they may actively seek out this interaction, or not regard this as physical abuse, and therefore be seen as a safe victim. Additionally where a person demonstrates self injurious behaviour the potential abuser may use this to mask any injury.

Practice recommendation

All individuals who exhibit challenging behaviour must have clear behaviour guidelines and staff should receive the training and support in dealing with challenging behaviour to ensure that situations do not result in abuse occurring.

All self inflicted injuries must be clearly documented and be tracked to ensure they were caused by the individual and stored confidentially.

Monitoring and preventing abuse

Sense is committed to ensuring that staff receive training in child and adult protection and challenging behaviour. Any allegations and/or instances of abuse are dealt with as a matter of extreme urgency. In addition, the particulars of the situation – including lessons learned, changes to work practice and additional staff training - are recorded on a monitoring form based on one used by Nottinghamshire Committee for the Protection of Vulnerable Adults.

This information is then presented to the Sense Protection Committee which meets four times each year to monitor allegations of abuse, to identify issues that need to be addressed, and to make recommendations about Sense’s organisational policy and practice.

The Committee has an independent chair, Dr Paul Kingston, who has wide knowledge of elder abuse, is a co-editor of the Journal of Adult Protection and Professor of Primary Healthcare at the University of Staffordshire. A further independent 'expert' is Debra Kitson from the Ann Craft Trust who has considerable experience in protecting vulnerable children and adults. In addition senior personnel from within Sense play a key part in the work of the Committee.

Conclusions

The key to reducing abuse is to ensure that deafblind individuals are supported by staff who are appropriately trained, have an awareness of protection issues and understand the impact their actions may have when supporting individuals. In addition, deafblind individuals need support in three key areas:

1. Help to understand what is meant by abuse or as a minimum, what is acceptable and unacceptable behaviour of others. For many congenital deafblind people this will be learnt through the manner in which they are supported, knowledge of their own body and how they can meet their own needs.
2. Deafblind individuals need to receive consistent and high quality care so that they can develop an understanding of what is acceptable and unacceptable.
3. Communication is the key to both learning and interacting with others.  If someone does not have an appropriate communication system they will be viewed as a safe victim by potential abusers. Through communication the person has opportunities to learn concepts, rights and most importantly have the ability to disclose to others when abuse has occurred.

In addition, the regular analysis of reported incidences of abuse by the Protection Committee will enable the organisation to make positive changes in policy and procedure that will support the reduction in the vulnerability of deafblind individuals.

If you would like to find out more about the work of Sense’s Protection Committee please contact Steve Kiekopf at steve.kiekopf@sense.org.uk.