The Malta Independent 27 May 2024, Monday
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Quality of life of a person with a disability gets just 5/10 rating from Agenzija Sapport CEO

Semira Abbas Shalan Sunday, 4 February 2024, 09:00 Last update: about 5 months ago

Agenzija Sapport’s CEO Oliver Scicluna told The Malta Independent on Sunday that he would rate the quality of life of a person with a disability in Malta as being only five out of 10, meaning that so much more needs to be done.

"I would rate it a 5,” he replied when asked to give a rating from one to 10. “We have done a lot as a country, and in some areas we have excelled over other countries, but there are certain areas where we still need to excel in," Scicluna said.

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He added that he will always expect better, even from himself as a CEO of a national agency for persons with disabilities.

"People evolve. What was expected from a person with a disability 10 years ago is not expected now. Today, these people speak about having a family, building relationships, sexuality, on top of finding a job. Tomorrow they will speak about becoming entrepreneurs. That should be the argument, not just giving them the basics," Scicluna said.

Scicluna, who had previously also occupied the role of Commissioner for the Rights of Persons with Disability, assumed to role of Agenzija Sapport CEO two months after he quit politics when he failed to get elected in the 2022 election, and says that since then the agency he leads has shifted its focus.

It has moved more towards the concept of the de-institutionalisation of persons with disabilities, he said.

The agency's work in the past few years focused on the move towards more community living for persons with disabilities, Scicluna said, adding that the agency has been working on projects, and has opened a number of small residences in the community.

The former Labour MP said that since he assumed his role, the agency's strategy was amended so that its focus turns to the implementation of the Convention on the Rights of Persons with Disabilities and for its services to remain in line with the convention's principles.

The concept of de-institutionalisation

The challenge is, however, that the concept of de-institutionalisation is very difficult to implement, Scicluna said.

He explained that there are persons with disabilities who live in institutions and have no other choice, and the agency wants to provide that choice.

There are also persons who have the potential to live alone, with some more support - such as having personal assistance, Scicluna said, mentioning the reform, to be implemented this year and managed by Aġenzija Sapport, which would offer personal assistants to people with disabilities and increase autonomy over the choice of who will assist him/her/them.

Scicluna said that there are also those persons who live in the community with their parents or guardians. He mentioned parents' concerns over their children, and what would come of them when they are no longer around.

Also in this respect, the agency is looking to provide a choice for the individual, rather than the only option being to enter an institution or residence which is not of their own choice, he said.

"To make all of this work, logistically, financially, and other aspects, is a challenge," Scicluna said, remarking that there are many unemployed persons with disabilities.

In order to live independently, they must have a place to live in, they have to pay for amenities, daily necessities, internet, and more, Scicluna said, mentioning the need for the full financial package, and the implementation of 'personal budgeting' in the personal assistant reform.

"To incorporate all these things together, as an agency, we always need the help of other entities, such as the Housing Authority," Scicluna said, adding that in this regard, housing is very difficult to come by.

 

Accommodation possibilities

The agency is, out of its own volition, trying to find more accommodation possibilities for persons with disabilities, he said, adding that the agency cannot wait around, and must be proactive.

Scicluna said that the agency has managed to acquire an apartment for a woman with disabilities who has lived all her life in an institution.

"It was her wish to stop living in an institution and start living independently. And she will succeed," Scicluna said, adding that the woman is being trained to live independently in one of the agency's facilities.

He said that three persons with disabilities are currently undergoing independent-living training with their support workers, where they learn about home and personal hygiene, cooking, doing their laundry, make their own beds and more.

Scicluna said that sometimes, the concept of independent living does not work in its entirety in residential facilities, as support workers would end up doing the job for the person.

"It should be the other way round, even if certain persons with disabilities need a lot of support. If we are cooking, let's cook together," Scicluna said, adding that targeting this training when the individuals are young is very important to the agency.

He continued that unfortunately, when the person is above a certain age, it would be very difficult for the professionals and support workers to be able to work with them, especially if the individual has had everything done for them throughout their lives.

Scicluna said that he is confident that the challenge of ensuring the whole package for a person with disabilities to be able to live independently can be overcome if all stakeholders pull the same rope.

"We are working a lot, even in terms of explaining de-institutionalisation with NGOs, such as Id-Dar tal-Providenza, Fondazzjoni Wens, Fondazzjoni Nazareth," Scicluna said, adding that while there might be initial resistance to the concept, slowly, the agency is getting there. He added that the agency wants for these NGOs to adopt this model of choice.

"They understand that they also need to evolve what they are doing at the moment in time," Scicluna added.

He said that the concept revolves around the choice of the person, and they should not be made to live with persons they do not agree with.

While there are also limitations on the type of accommodation the person gets, Scicluna said forcing two people to live together when they do not 'match' can cause problems, and the reality of a situation should not be masqueraded behind a 'family photo,' when the reality is far from such.

"We are trying our best to make sure that they have choices. We are also giving them the chance to conduct interview with the workers to decide on who they want accompanying them when they travel abroad," Scicluna said.

He said that persons with disabilities should not be strictly regimented in their lifestyle. Adults who have a disability and are not under any legal restrictions may go out of their residences as they please, Scicluna said.

Facing challenges

Asked on the challenges persons with disabilities face in Malta, Scicluna mentioned the biggest one being issues with employment.

An enforcement law was passed with regards to this, Scicluna said, referring to the Act which introduced the obligation to maintain a registry of employees with disabilities and prohibited unfair dismissal on the basis of disability.

The Act also established a 2% quota for companies with more than 20 employees.

Despite this, Scicluna said that "we still find a large number of persons with mostly intellectual disabilities who find it hard to enter the working world," Scicluna said, adding that they often fall through the cracks, despite the help offered by several foundations.

Scicluna continued that some persons with disabilities still find it difficult to find a job even after doing courses.

"The largest existing problem is that companies in Malta have a fear of the unknown," Scicluna said, with the lack of support for them to be able to accommodate persons with disabilities in their workplace.

He said that this is not being addressed. Scicluna suggested a type of workforce, which focuses on disability job coaching and makes direct contact with companies when employing a person with disability, adding that each person is different both in their impairments, but also individually.

Scicluna also spoke about job carving (customising duties or creating specialist jobs for people with disabilities) which job coaches can do with companies.

"It is futile to have a law which seemingly 'punishes' the company, but there is not enough aid for this job carving to take place at the workplace," Scicluna said, adding that while this law has made an impact, which saw many persons with disabilities start working, "it is still failing certain people."

Poor pavements

Another challenge Scicluna mentioned is Malta's pavements, which are not up to standard for persons with disabilities in the country.

Scicluna said that while the standards are there, they are not being followed. Mentioning construction sites, Scicluna questioned if the boundaries around a construction area are being made accessible for persons with disabilities.

"It is futile to speak about de-institutionalisation, and independent community living, if the community itself is not accessible, for them to carry out their daily needs," Scicluna said.

He said he communicates with the current Commissioner for the CRPD Rhoda Garland, on such issues, adding that there needs to be a larger outreach for accessibility, as well infrastructure, as well as information.

Scicluna said that an EU Directive says that government websites must be accessible for persons with disabilities, noting that not all of them are accessible. He commended the work done by the Foundation for Information Technology Accessibility (FITA) in this regard.

He said that there is a push for further accessibility, mentioning the EU Accessibility Directive, which also speaks about accessibility around transportation, financial services, and more.

"One thing that has been done positively recently was the creation of the Disability Issues Directorate, which ensures that if a politician changes, the national strategy remains, and the working groups will also remain," Scicluna said.

Inflation woes

Scicluna said that challenges continued to increase, especially after the Covid-19 pandemic, and inflation as a result of world conflicts.

He said that certain equipment for persons with disabilities have soared in price, and despite the subsidies, many persons with disabilities still cannot afford them.

"For example, an electronic automatic wheelchair. Nowadays these cost double the price they were before the pandemic," Scicluna said, adding that so is the case for a number of other aids and accessories.

There's also the mental health of a person with disabilities to take into consideration, Scicluna said. Another challenge Scicluna mentioned is the lack of early inclusive education, which will affect a person in their later life.

Scicluna also said that the agency is inundated with cases and situations which had not been dealt with early on.

"That is why it is important to start assisting children with disabilities at an early age, if they were born with their impairment or it is in its early stages," Scicluna said, adding that early intervention is essential for everything.

 

The Blue Badge

Asked about abuse when it comes to the Blue Badge document and the incorrect use of it, Scicluna appealed for increased enforcement and responsibility.

"The law is there, after the scheme was introduced when I was Commissioner, there weren't any contraventions issued for around two years," Scicluna said, adding that the law must be enforced.

He admitted that it is not easy to enforce it, as accessible parking bays are found all around the island.

"If we invest in the use of technology, such as sensors, I believe that we can reduce this abuse," Scicluna said, adding that this is something which is being explored.

Scicluna also spoke of the education element in this regard. As a Blue Badge user himself, he has often left the designated parking bay empty for other users if he found a parking spot elsewhere.

He explained the frustration of Blue Badge users who find the designated parking bay for persons with disabilities being occupied by a car with no Blue Badge document, where they then would have to leave.

"We must ourselves set an example," Scicluna said, adding that persons parking adjacent or behind an accessible parking bay should make sure to leave enough space for the person with disabilities to exit their vehicle.

Scicluna said that there must be responsibility, even within a person with a disability who does not necessarily need a reserved parking, or has their own personal garage, noting that the more Blue Badges issued, the greater a challenge for the country to designate such parking spaces.

He said that there are only around 3,000 designated parking bays for persons with disabilities, which is not even in line with accessibility standards, as a country.

Disability benefits fraud

Scicluna was asked about the disability benefits fraud, which saw hundreds of people receive fraudulent severe disability benefits, for disabilities they did not have or were not entitled to.

Asked on the negative effects it may have had on persons with disabilities who are entitled to these benefits, Scicluna asserted that any abuse is wrong.

"What concerns me on the case is that there were people who stated that they had mental health issues, and because social security does not recognize mental health as a disability, some of them stated that they had epilepsy," Scicluna said.

He added that mental health problems can at times be more detrimental to the person, and some people had to "cheat" to receive an allowance, having to pass through the window, rather than the door.

"We should not judge the whole picture," Scicluna said, adding that while those who abused of the system must get penalised, there were those who had to cheat the system to receive what they were entitled to, noting that mental health - such as bipolar, acute depression, are listed in the convention as a disability.

In this regard, things will start to change, Scicluna said, adding that the way assessments on disability allowances will be done are being developed with Agenzija Sapport at a professional level, using a model recommended by the convention.

Scicluna referred to the International Classification of Functioning, which is a framework and classification system to assess an individual's functioning, putting assessment in context and provides the focus for selecting relevant aspects of functioning and disability for assessment.

He said that the way the benefits fraud story was portrayed affected people, in the way it was negatively portrayed as a racket all throughout. "As an ex-Commissioner, it did not feel right to judge people without knowing the individual cases," Scicluna said.

Scicluna said that in the last years of his role as Commissioner for the CRPD, himself, a number of mental health NGOs, as well as the then-Commissioner for Mental Health John Cachia, had signed an agreement to push for persons with mental health to be recognised as persons with a disability for an allowance.

"Had that materialised, those persons would not have had to cheat," Scicluna said.

Abuse on persons with disability

He was asked about abuse committed by a carer to a person with a disability, and if such cases are common.

"Luckily, we do not find a lot of these cases, and I feel happy to say that. There are instances where persons working hands-on with people with disabilities lack in their duty, on small matters. As an agency we have no tolerance to abuse and we are giving a lot of attention to disciplinary action, so things do not happen again," Scicluna said.

Scicluna thanked the employees within the agency, those working with NGOs and other entities, who give their utmost to provide the best service to people with disabilities.

Scicluna also noted the problem of a shortage in human resources.

"Our issue is not just a lack of carers, but a lack of professionals, social workers, people who know the sector well, or have studied/are experienced in the sector, a lack of occupational therapists," Scicluna said, adding that this shortage is hindering the agency from giving a 100% in services.

He said that government does invest in the agency, but not enough people are attracted to the sector. "The country needs to work on a short and long-term national strategy when it comes to these types of professions, as unfortunately, in a few years' time, the situation will get worse," Scicluna said.

As an MP, Scicluna had asserted his anti-clientelism stance. He was asked if he still fights this concept in his current role, and if he still needs to assert his approach.

"Very much so," Scicluna said, explaining that many people, including politicians from both sides of the House, have come to him.

"But, they know me. They know I will argue back with the same argument I had argued when I was an MP. What I am happy with is that my Minister does not put that type of pressure on me," Scicluna said, adding that at the end of the day, he wants to work fairly.

Scicluna said that although the argument he had made "definitely did not" help him to get re-elected into Parliament, he respects the decision made by the public.

"At least, that had an impact where people understood my position, and I'm being respected for it," Scicluna said.

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