Ageing parents of disabled children are still concerned about the acute shortage of supported living residences, despite the government’s reassurances that it plans more services for people with disabilities to remain within the community.

We’re the only parents who wish our children would pass away before we do

“It is unacceptable that our intellectually challenged children end up in mental institutions or homes for the elderly when we pass away,” Laurence Borg, 67, from the National Parents’ Society of Persons with Disability, said.

The debate on this long-standing concern was revived last week when Labour leader Joseph Muscat proposed that disabled children should be able to live in small residential homes once their parents died.

The government replied by pointing out there were 119 people living in 14 homes run by Aġenzija Sapport or NGOs.

According to Mr Borg, hundreds of parents felt the issue was far from resolved. There are more than 12,000 disabled people registered with the National Commission for People with a Disability (KNPD). Some 3,200 are long-term disabled people aged between 35 and 59.

“My bubbly, 33-year-old intellectually challenged son would go crazy if he’s put in an elderly home or a hospital,” another parent, 70-year-old Simonide Rancati Chapelle, said.

“I think we’re the only parents who wish our children would pass away before we do,” she added.

Mr Borg, who has a 34-year-old son, agreed.

“That’s my prayer every night: God, if you exist, please, take him before me. Can you be in a worse position than that?” he asked.

He said parents were often told that, when they died, their disabled children would be cared for.

“But to put our mind at rest we need to know where they’ll be, who’ll take care of them and who’ll administer their inheritance... before we die.

“I want to at least rest in peace, especially since life is taking its toll on us and we’re at an age that is continuously threatened by diseases.

“I believe I have survived cancer and a bypass intervention because this concern of mine has not been solved yet.”

Another parent, Philip Rizzo, 61, said: “We cannot rest in peace. When I had a serious cancer scare in February, I lay there in bed thinking about all I’ve done in my life and realised my biggest problem hadn’t been resolved yet.

“We’re in a position where, within five to seven years, we may pass away. Doesn’t my 35-year-old daughter have a right to continue living after I die?” Mr Rizzo asked.

The three parents insisted they were not asking for charity and were prepared to contribute financially.

“We don’t want supported living schemes to be available only for those who can afford them. We also don’t mind if the system is means-tested and we contribute according to our financial status. We’re even ready to sponsor others,” Mr Rizzo said.

The parents have, through the years, insisted on the provision of community-based residential homes through public-private partnership schemes, the introduction of special fiscal concessions and the creation of protective trusts.

Mr Borg has been making such requests repeatedly as budget proposals every year for the past seven years.

Last year, KNPD chairman Joe Camilleri insisted on the need of cross-party agreement to commit ring-fenced public funds that would enable the creation of some 10 residential units every year.

In a statement that appeared to be aimed at Labour’s commitment to set up homes in the community for disabled people, Family Affairs Minister Chris Said pointed out last week that Aġenzija Sapport had been providing residential services for the past 10 years.

Last Sunday, Prime Minister Lawrence Gonzi announced that a pilot project was under way to provide disabled people with personal assistants.

However, the three parents believe that personal assistants during the day are unnecessary.

Intellectually challenged people required 24/7 care and had to integrate within the small community where they would live after their parents died even before their parents actually passed away, they said.

“We have to differentiate between the needs of intellectually disabled and physically disabled people, just as one differentiates between the aspirations of people who were not disabled,” Mr Rizzo said.

“There might be people who will be able to live in their parents’ home, when they pass away, but how can our intellectually challenged children – who have for the past 35 years not been able to choose anything – be able to pick out their own personal assistant?”