The Kummissjoni Nazzjonali Persuni b’Diżabilità (KNPD) is currently implementing the project “Promoting the Social Inclusion of Disabled Persons with Challenging Behaviour” (ESF3.105). This project is co-financed by the European Union through the European Social Fund and consists mainly of a research study and a training programme for staff members who work with disabled persons with challenging behaviour.

This type of behaviour is, in many cases, a result of difficulty with comprehension and communication and is not controlled by the disabled person displaying the behaviour. In many cases, the behaviour is mild or moderate, but can still cause a lot of distress and disruption to all those affected. Challenging behaviour is an all-encompassing term that refers to a number of behaviours that can prove detrimental to the disabled people themselves as well as others around them. It can be aggressive, disruptive or destructive and can sometimes lead to self-harm and injury. Examples of challenging behaviour include repetitive head butting, kicking, spitting, inappropriate sexualised behaviour and stereotyped behaviour such as rocking or elective incontinence.

The research, entitled “The Current Situation of Disabled Persons with Challenging Behaviour in Malta”, was conducted earlier this year. It consisted of 100 face-to-face interviews with disabled persons with challenging behaviour or their primary care givers and 100 face-to-face interviews with staff members. The results give a clear picture of the lives of disabled persons with challenging behaviour in Malta and Gozo and delve into several issues pertaining both to them and staff who work with them. The research results will be presented during a half-day seminar on Wednesday 5 September at the Intercontinental Hotel in St Julian’s between 8:30am and 1pm. This event is open to the general public and anyone who would like to attend can register by contacting Carmel Bezzina by phone on 2278 8555 or by e-mail at [email protected]

On the other hand, the training will give an opportunity to staff members who work with disabled persons with challenging behaviour to learn what triggers challenging behaviour; how to deal with various types of challenging behaviour, how to provide alternative means of communication and self-expression, and how to enhance the quality of life of disabled persons with challenging behaviour.

KNPD is eager to see that the benefits of this training will be long term. Thus it is planning that the training mentioned above will be a train-the-trainer course, thus the participants will have the possibility to train their colleagues in their respective place of work. Furthermore, KNPD is working for this training to be accredited and possibly delivered on a regular basis by a learning institution.

Challenging behaviour in people with developmental disabilities, especially those on the autistic spectrum, may be caused by a number of factors, including biological (pain, medication, the need for sensory stimulation), social (boredom, seeking social interaction, the need for an element of control, lack of knowledge of community norms, insensitivity of staff members and services to the person’s wishes and needs), environmental (physical aspects such as noise and lighting, or gaining access to preferred objects or activities), psychological (feeling excluded, lonely, devalued, labelled, disempowered, living up to people’s negative expectations) or simply a means of communication. Often, challenging behaviour is learned and brings rewards and it is very often possible to teach people new behaviour to achieve the same aims.

Disabled persons who have challenging behaviour, as others with complex dependency needs, are at great risk of exclusion from mainstream society, including education and training opportunities, work and employment, and activities for personal and social development. Moreover, they are also very often excluded from services that are specifically for disabled people, such as day services, training courses for disabled people, and supported and sheltered employment opportunities. This means that they are even excluded from activities organised specifically for disabled people, including outings, cultural exchanges, trips abroad, and similar activities. Challenging behaviour can be a significant obstacle to resettlement in the community and a frequent cause of requests for admission or re-admission to hospital. Those who are resettled into community-based homes are not necessarily socially included and may end up being largely confined to their home. Disabled persons with challenging behaviour thus need even more support to be able to overcome this double wall of exclusion.

It is a fact that people who have children or family members who exhibit challenging behaviour come to a point where they can no longer cope with such behaviour and therefore turn to professionals for help. Unfortunately, it is also true that few to none of the professionals in the Maltese context are trained in working with disabled people with challenging behaviour and therefore their help ends up not being sufficient to keep the individual at home. This means that the person with disability will either be placed in a residential home, or in an institution such as a mental hospital. Most professionals agree that institutionalisation for persons with disability tends to lead to loss of certain skills (such as activities of daily living) which support the person from actualising their potential and thus becoming a contributing member of society. Thus, the longer the person lives in an institution, the harder it will be for them to re-integrate themselves in society.

Challenging behaviour may seriously affect a person’s health and quality of life especially when it hinders the individual from engaging in everyday activities. Although our society today is striving harder to promote inclusion, it is still a reality that people who exhibit challenging behaviour are often limited in the places they can frequent due to the fact that support workers who are not specifically trained to deal with such behaviour do not feel competent or confident enough to take these individuals to more mainstream places. Many a time, with the intention of safeguarding the people themselves as well as the general public, carers opt to take the disabled person with challenging behaviour to more secluded places not frequented by a lot of people. This means that some of individuals with challenging behaviour lead a very limited existence sometimes never experiencing situations that we all take for granted, such as going into a shop or eating in a restaurant, let alone pursuing interests or furthering their studies.

More information about ESF3.105 ‘Promoting the social inclusion of disabled persons with challenging behaviour’ can be obtained by contacting KNPD.