Imagine being told what time to wake up, when to sleep, what food to eat and how much – every single day. This is how some people with disabilities live their lives in residential institutions.  

There are about 350 people with disabilities living in institutions, with over a 100 on waiting lists. Some have now spoken about how this is not how they want to live.

Their voice was captured, for the first time, in research carried out by the  Commission for the Rights of Persons with Disability as part of a national drive towards deinstitutionalisation.

“You have to obey the orders they give you… I want them to understand and listen to me,” said one research participant who lives in a care home. Another said: “As persons with disabilities, we want independence.”

The study was launched on Monday morning during a conference. CRPD’s research and policy manager Allison Zammit and EU funds manager Jessica Borg explained that, according to the United Nations' Convention on the Rights of Persons with Disability, that was transposed into Maltese law, every person has the right to live in the community as a member of that community.

Jessica Borg and Allison Zammit from the CRPD spoke about the research outcome. PHOTO: Matthew Mirabelli

The research sought to provide a snapshot of the current situation in Malta in terms of where people with disabilities are living. Findings showed that 121 people are living in government-run residential care homes, 116 in homes run by NGOs, 95 in church-run homes and 24 in private residential homes.

One home said it had a waiting list of 100 people. Another had 30 people on the waiting list with only three people having left in the past 11 years.

Zammit and Borg explained that, by definition, an institution is a place where people are not allowed to take control of their lives. The research was based on four in-depth interviews with people with disabilities who lived or are living in institutions, five interviews with management of residential homes, and three focus groups with people living in institutions.

Why do they live in care homes?

Findings showed that the main reason why people moved into care homes was in preparation for their parents passing away. It flagged that "parents are screaming for help". Other reasons included following a crisis such as the sudden death or health issues of a parent and being discharged from Mount Carmel Hospital.

“In many cases, parents feel that a home is the safest option in light of the lack of community services and high cost of property,” they said. While stressing that some people were happy living in the care homes they were in – and spoke positively of the services and support -  others raised issues that bothered them.

The main one was that they had to follow rigid rules and structures such as when to wake up, sleep and eat. They also spoke about a lack of privacy and autonomy such as not being able to choose when to go out and have their personal things confiscated until they complied with rules.

CRPD's research gave a voice to people living in residential care. PHOTO: Matthew Mirabelli

“You feel that you ended up in a young girl’s body,” one participant said while another added: “They stay touching my things and placing them into different places which I do not like.”

There was also the issue of overprotection and it emerged that the more severe the disability, the less choice the people were given.

Management members who were also interviewed flagged a lack of human resources and people willing to work in the disability sector. There spoke about the need to further train people currently working to develop a more positive attitude.

They concluded by saying that many of the people who live in institutions could live in the community with the right and timely support. They stressed on the importance of choice. It was okay to live in a care home, but this should be out of choice.

Disability Commissioner Rhoda Garland said the research formed part of the commission’s process to draw up a comprehensive roadmap that would lead to the deinstitutionalisation of people with disabilities. She stressed that, for this to happen, they needed the support of stakeholders across the board that ranged from education to infrastructure.

In a recent interview, Garland said she believes that the 26,760 people with disabilities listed with the commission do not give the full picture and do not reflect the international average of having 8-10 per cent of a population with disabilities. Ten per cent of the current population would mean a total of about 50,000 people with some form of disability. She spoke about the need for a national register of people with disabilties. 

Inclusion Minister Julia Farrugia Portelli said this research came when the country was discussing the personal assistance reform. The public consultation closed last week. There were 30 submissions,  including four from organisations that worked with people with disabilities.