Valerie Brincat’s autistic 10-year-old son does not show any challenging behaviour when he is with his mother but feels less confident when she is not around.

Social inclusion does not stop at disabled people with challenging behaviour

“These days we speak of social inclusion, but this does not stop at accepting disabled people with challenging behaviour.

“It includes adapting the environment and accommodating it to their needs,” believes the 37-year-old mother, who has two other autistic children.

Her son has recently been moved from a mainstream school to a special one, after he was suspended for a month for hitting another pupil and had his Learning Support Assistant changed three times.

Challenging behaviour is manifested when a person attempts to gain control of a confusing world and in severe cases could lead to serious or fatal injury such as brain damage, as a result of head banging. But most of the time, the behaviour is mild or moderate.

The National Commission for Disabled People has since the 1990s expressed concern about daily issues that people with challenging behaviour have to deal with. But it only received EU funds this year to create a training programme providing a high quality service to these families.

This unprecedented three-part project, called Promoting the Social Inclusion of Disabled Persons with Challenging Behaviour, included a survey held between March and July.

One-on-one interviews were held with 100 people with challenging behaviour or their primary carers, as well as 100 professional carers. Currently, 1,000 people with challenging behaviour receive support in Malta.

The second part will train professional carers and help them understand causes of challenging behaviour, how to tackle it and how to enhance communication.

During the project’s third phase, these professionals will draft a programme for people with challenging behaviour then train between 120 and 160 other carers.

The thinking behind the project is that people with challenging behaviour are the most at risk of exclusion from society, education, training and the labour market.

Only five of the interviewed disabled people have some form of employment, said researcher David Spiteri Gingell as he presented the results yesterday morning. However, the stigma of challenging behaviour remains one of the hardest hurdles to overcome. Mr Spiteri Gingell said some parents refused to take part in the survey when they were told its focus.

Some said they did not consider their children to have “challenging behaviour”.

But parents who did speak to the researchers expressed concern about what would happen to their children when they died and the importance of equipping learning support assistants with more professional skills.

Carers, on the other hand, would like more support systems to help them share experiences and better understand how to cope with people with different challenging behaviours.

The study results can be found at www.knpd.org.

Survey results

• 70% of people with challenging behaviour live with their parents.

• 24% spend their day with their relatives or in an institution.

• 42 of the 100 people interviewed suffer from autism.

• 88% of the professional carers are female.

• 76% of carers believe people with challenging behaviour feel better when they’re treated as an individual, instead of as a disabled person.