Parents of intellectually disabled children are probably the only people on earth who hope their children die before they do.

Simonide Rancati Chapelle.

“This thought can only be cancelled if we see our child settled,” Simonide Rancati Chapelle, 73, says. “We pray and hope that someone will come up with a project that will give us parents the peace of mind we deserve and the care, protection, happiness, dignity and possibly also love our children need.

“We don’t want to die without first seeing our beloved children cared for and well adjusted to life without us.”

Three parents of intellectually disabled children open up about the gnawing fear that becomes increasingly more intense as the parents age. The question – ‘who will look after my child when I can no longer do so?’ – becomes constantly present.

Ms Rancati Chapelle is mother to 36-year-old Ivan Patrignani, while Lawrence Borg, 70, and his wife Monica, 69, are parents to Stephen, 38.

“Ever since my husband was diagnosed with cancer, Ivan began to worry a lot. He started to tell me: ‘You are not going to die. Promise me that you’re never going to die.’ But how can I ever promise him something like that?” Ms Rancati Chapelle says.

“I’ve tried to get him used to the idea that all of us must die. I told him heaven is made up of discos and everyone is dancing,” she adds with a smile.

I told him heaven is made up of discos and everyone is dancing

Mr Borg says there are currently over 700 people with intellectual disabilities whose parents are of pensionable age. The rate at which homes are being provided, or planned, however, were far from enough to cater for the demand.

The first residential home in the community for persons with disabilities was opened by the government in October. It is the first of 10 such residences planned for communities around Malta and Gozo and catering for people with different needs and levels of independence. “Although semi-independent, our son cannot do without our support and caring,” Mr Borg says.

“In spite of the many sacrifices we have gone through to ensure that he enjoys reasonable financial security and independence, there is very little we can count on except the pre-election promise that disabled people will be well catered for once their parents have passed away.”

Ms Borg stressed the importance of a transitional period allowing disabled people to get used to the idea of living in a different environment.

“They can’t be expected to suddenly move into the supported living apartments upon our death. It would be a devastating, traumatic experience if people like our son were to lose their parents, friends and living environment all in one day. “It needs to be a gradual process. Perhaps they could first sleep over during the weekends and then, slowly start spending more of their time there. We can only have peace of mind if we see our son settled in a home with the proper caring, environment and companionship long before we are no longer able to care for him ourselves.”

Mr Borg adds that he could not wait for the day when disabled people can exercise their right of choosing a home, companionship and accessible support services as per the UN Convention on the Rights of Persons with Disability.

This could only happen if homes were widespread in all localities and long waiting lists no longer existed.

In spite of the goodwill and commitment that presently exist and due to prevailing constraints and limitations, he could appreciate and understand that the the State by itself could not satisfactorily satisfy demand in a short-term.

“Like myself, I know of many parents who are hoping that private enterprise will give a helping hand by providing more independent supported living homes for disabled people through private-public partnership schemes which, with some subsidy from public funds, will be affordable to a wide range of situations,” he adds.

Meanwhile, HILA (Home to Independence and Limitless Abilities) is a new entity set up by Care Malta which will offer a range of services to people with a disability including housing, learning and development and leisure with a person centred approach.

Casa Apap Bologna in Mosta will be the first independent supported living home which HILA will be opening in June. It will cater for between 10 to 20 people.