Who will take care of my child?

The older she gets, the more the mother of a young woman with Down’s syndrome tries to cope with the growing fear that her daughter may be destined for a lonely future.

“All I wish is that when I die I can close my eyes with the peace of mind that my daughter is settled,” 64-year-old Helen Mifsud says in a soft tone.

Having been widowed 14 years ago, Ms Mifsud is haunted by the thought that, if something happens to her, her 21-year-old daughter Maria would have no one to turn to.

Although her daughter is the youngest of four siblings, Ms Mifsud wants to see her settled in an independent life where she is not a burden to her brother and sisters.

The young woman shares her mother’s wishes since she too would like to be able to live alone – but she’s been sidelined in her search for a job for five years.

“I’d like to do office work... I know I’d be competent,” she says in a determined tone.

“Sometimes she surprises me with her capabilities,” her mother adds. “I worry when I see that she ends up spending most of her days at home with me because no one will employ her.

“It’s sad when she sees her brother go to work in the morning and asks me why she is relegated to spending her day at home.”

Her thoughts echo the concerns of many parents of children who have the syndrome, Down Syndrome Association president Marthese Mugliette points out.

Each year, about 10 babies are born with Down’s syndrome and the association is working to ensure that their happy days do not end when their parents die.

The change has to start from the education system. Children with intellectual disabilities should be equipped with the basic skills they need at school, Ms Mugliette says. These skills include simple things such as handling money and how to catch a bus.

By the time Down’s syndrome children are 16 years of age, Ms Mugliette adds, they have not reached their full potential since their mental age is younger than their physical age.

While their peers move on to sixth form, they still have learning to do. The association, with the support of the Eden Foundation organises the Reach programme through which they are taught basic skills to enter the working world.

However, parents have to fork out hundreds of euros for their children to attend the programme when other 16-year-old who go to sixth form are provided with a stipend.

To add insult to injury, she says, even though parents spend money for courses, employers rarely take on a person with Down’s syndrome.

The fact that the ETC lists job-seekers with all disabilities under the same umbrella does not help as employers often opt to employ the physically disabled.

“This is a pity since Down’s syndrome children can be taught. Although there are various levels of ability, many are capable of learning and, once they do, they perform flawlessly,” Ms Mugliette says.

The association backs the recent suggestion of the Opposition for a national debate on the future of people with intellectual disabilities.

It is proposing that the government allocates residential homes, such as apartments, for such people who can be independent without too much help.

The homes that exist are full, there are long waiting lists and the association feels it is not right to place Down’s syndrome people with others with severe mental disabilities as they will not reach their full potential in such an environment.

Helping these people live independently would mean less of a burden on the state in future – it’s a win-win situation.

Ms Mugliette stressed the importance of involving all stakeholders, like the association, in the government’s policy making and urged parents of children who have Down’s syndrome to join the association as there is strength in numbers.

“We have to understand that these children have the same rights and dreams as everyone else. We must believe in them... Let’s at least put their future on the national agenda,” she says.

Anyone who wishes to contact the association can call on 2123 5158 or email info@dsa.org.mt