In pursuit of continuing education

With some help, many people with Down Syndrome can live a fairly normal life. But with barely any education available after they turn 16, they are not being prepared for the workplace, Down Syndrome Association chairman Marthese Mugliette tells Cynthia Busuttil

The fact that many people with Down Syndrome do not find a job is in great part due to the lack of preparation they get, Mrs Mugliette believes.

When they finish school at 16, people with Down Syndrome are in no way prepared to enter the workforce. They are not even ready for the programme offered by the Employment and Training Corporation to prepare them for work.

"You have to keep in mind that a 16-year-old with Down Syndrome has the mental age of a 12- or 13-year-old, sometimes even younger.

"But people with Down Syndrome have abilities and, although they take more time to learn, they do learn. They have a right for continuing education," she says, adding that children with Down Syndrome need repetition to avoid forgetting what they would have learnt.

Although Malta has made giant steps forward in education for people with intellectual disabilities over the past 20 years, a lot still needs to be done. Inclusive education was one of the major achievements for people with intellectual disabilities who are now able to learn in the same classroom as other pupils.

"But this is only until they are 16 and is not holistic. Neither is it specifically geared toward their needs," she points out, adding that some subjects might be too difficult for children with intellectual disabilities.

Mrs Mugliette, herself the mother of a girl with Down Syndrome, says that children with intellectual disabilities do not stop living at 16, and neither should their education stop then. "We need to give them the necessary skills to find a job, or else they will never get work. We cannot expect anyone to employ them unless they are prepared."

Even the one-year course organised by the Malta College for Art Science and Technology to prepare them for independent living - which Mrs Mugliette insists is not enough, but is, at least, a start - was being discontinued.

In view of this, the Down Syndrome Association, in collaboration with the Eden Foundation, started a two-year transition programme last October intended to prepare youngsters for the workplace. But because the association is using the services of the foundation, it has to charge a fee for the course, and not all parents can afford to pay.

Apart from continuing with their education, youngsters with Down Syndrome are able to learn life skills during the two-year course. "They meet up at our premises in Valletta, which is ideally situated close to shops and banks. The course is geared to prepare them to be independent, teaching them how to use an ATM, where important buildings are situated, do their shopping and even cook.

"The government should offer such a course for free, just like it offers education for free," she insists. The association is trying to tap into EU funding to finance the programme, being offered to six young people. "We want other children to be able to attend, to get these benefits."

Mrs Mugliette says the authorities need to organise post-secondary education for people with intellectual disability.

"We have long been urging the government to offer post-secondary education. MCAST had started the Pathway to Independent Living programme, but three times a week for a year is not enough. Even this is being discontinued, so 16-year-olds with intellectual problems have nowhere to go after they finish secondary school."

She points out that Malta is a signatory to the Unesco's Salamanca Framework for Action, which lays down that young people with education needs should be helped to make an effective transition from school to working life. The framework states that schools should assist such young people to become economically active and provide them with the skills needed in everyday life.

She argues that people with physical disabilities who are mentally capable were able to continue their education, even at university level, and continuing education should also be offered to those with mental disabilities.

"Today, we are talking about the importance of lifelong learning. So why does this not exist for people with Down Syndrome?"

Parents have the choice of sending their children to a special school until they turn 19. Mrs Mugliette says that while she understood why some parents opt for this, especially if they work, this was not the right environment for children with Down Syndrome, and parents themselves were saying that their children had fallen behind. "After years in mainstream education, they should not go to a special school."

Referring to inclusion in mainstream schools, Mrs Mugliette remarks that this not only helps people with intellectual difficulties but also teaches other children that people who are different from them still have feelings and need love.

About 10 babies with Down Syndrome are born in Malta every year. Mrs Mugliett explains that the association strives to help parents get over their initial shock, but believes that more help should be available.

"We need to get social workers and psychologists on board. Parents are restarting their life from scratch, and they need help immediately, the minute their baby is born."

She stresses the importance that new parents speak to other parents who had been through the same experience rather than just to professionals.

She believes that pre-natal tests to diagnose Down Syndrome would be risky and could lead to the mother deciding to terminate the pregnancy. "Knowing that you are carrying a child that will have problems is not easy."

One of the parents' biggest concerns is what will happen to their children when they are no longer around. "People with an intellectual disability need help. What will the state do to help our children once we are no longer able to take care of them ourselves? The government has built residential homes for the elderly and people with a disability deserve this too."

Mrs Mugliette points out that there is a very long waiting list at the five residential homes for people with a disability and many times those who do not have anyone to take care of them end up either at Mount Carmel or in a home for the elderly.

"We need residential homes for those with mild intellectual disability who can live with just a little help," she quickly adds.

Named after British doctor John Langdon Down, Down Syndrome is a genetic disorder caused by an extra chromosome. The condition is associated with the impairment of cognitive ability and physical growth.