The number of children with complex educational needs “seems to be” on the increase but Malta lacks a national disability register to give a clear picture of the evolving situation, according to the Commissioner for the Rights of Persons with Disabilities.
Rhoda Garland stressed the importance of having a register that records all people with disabilities, whether born with the disability or whether acquired later in life through illness or accident.
Such a record would give visibility of any changing trends and allow for future planning in terms of resources needed.
“The lack of statistics hampers the work we are trying to do,” said Garland, who became disability commissioner in July.
With data scattered between the CRPD, Jobs Plus and the Social Security Department, the commission is working on a system that would result in a national register but legal stumbling blocks remain. Under the UN Convention on the Rights of People with Disabilities, for example, a person is not required to disclose their disability.
Garland believes that the 26,760 people 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.
Revisiting children’s needs in schools
Garland believes that one area that deserves to be researched, and where the lack of data is felt, is children. Currently, 1,758 people under the age of 17 are registered with the commission.
“We have a feeling the number of children with complex challenging behaviour is on the increase. We need to take a look at the systems in place. At the start of our inclusive education, decades ago, a cohort of children did not have the complex requirements that children have now.”
Asked if inclusive education was working, Garland believes that, generally speaking, it is important for both the disabled and the non-disabled children – as making disabilities more visible benefitted both.
She spoke about her concern about the shortage of LSEs, pointing out that children need to be supported to reach their potential.
Educators and professionals lacked the training to deal with more complex cases of children with challenging behaviour or psychosocial cases, and there are children who need therapeutic rather than academic services.
We want to teach them gradually to be more independent
Garland, who was born in the UK with spina bifida, feels she was lucky to have parents who pushed her towards being independent and attended a mainstream school in the UK.
As a child she often travelled to Malta – the place where her father lived for some years as a child when her grandfather was stationed in Malta.
Garland, an accountant, moved to Malta in 2006 and decided to rekindle her activism in the disability sector. She joined the NGO Breaking Limits and went on to do her master’s degree in disability studies.
Independence
One of the biggest challenges Garland has taken on board as commissioner is the de-institutionalisation of people with disabilities.
“Parents worry about what will happen to their children when they die, especially in the case of intellectual impairments. The standard procedure is to put their children on waiting lists for residences. We want to be able to help these people to be more independent – give them the confidence and self-esteem to make their own choices about what happens in their life. We want to teach them gradually to be more independent and then move into a home and get assistance with personal assistance, or share a house with a friend,” she said.
The commission is working on a long-term strategy and is currently working on addressing the gaps that include housing issues and personal assistants. The national support agency for disability, Aġenzija Sapport, is working on the Personal Assistance reform that is currently out for consultation until the end of November.
The reform would shift the mentality from having a “carer” to having a “personal assistant”. This was not just about the jargon. The reform seeks to give the person with disability more control over the support needed.
Words matter
And when it comes to language and jargon, the commission has been criticised for overreacting to the use of derogative language towards people with disabilities.
The most recent case involved a comment by singer and TV personality Phyllisienne Brincat during the programme Popolin on TVM in October. Brincat claimed that illness and disabilities were the result of original sin.
Her comments sparked a backlash.
A group of 150 people with disabilities and their relatives filed a formal complaint, asking the police to investigate the matter inciting hate speech against people with disabilities. Some time earlier, a man was fined €10,000 for posting an offensive meme on Facebook that denigrated people who have Down Syndrome. The CRPD had reported the meme to police.
“We have moved a long way since disability was seen as a curse and people were kept at home. If we want people to feel included in society, then it is not just about accessibility and services. It is about an attitude of respect.
“It shouldn’t be that these things are left on social media to be battled out by irritated and angry people. We need to take a stand on this. If these cases are acted upon, it raises awareness that this is something disabled people find completely offensive and should not happen,” she said.