The biggest fear of Hilda Žućić, mother young people with developmental disabilities, is "what will happen when she is gone".
Between the fear of possible inheritance disputes and the desire to protect his rights, this mother tries to find a solution that will not mean that her son will be left without autonomy, but also that her other child will be homeless. She was faced with the question of whether to initiate proceedings deprivation of business capacity to your disabled child.
"If you take away a person's legal capacity, you have canceled them as a human being. You have taken away their dignity. They are no longer visible in the system. For me, as a parent, it is devastating and painful," says Žužić.
It is better to be in prison than to have no business ability
By depriving people of business capacity, they lose the right to make any decisions about their own lives.
The process is initiated when an adult, due to mental illness or intellectual difficulties, is no longer able to take care of himself rationally.
Work capacity is not only about whether a person can work or not. The entire corpus of human rights is at stake - from the fact that someone can choose where they want to live and with whom, to dispose of their property, get married, give birth to a child, get medical treatment, to vote in elections.
When a person is completely deprived of business capacity, the law treats him as a child.
Photo: Private archive of interviewee Hilda ŽužićHilda believes that no one wants to disenfranchise their child who has developmental disabilities
According to the latest data from the Republic Institute for Social Protection from 2012, about 29,000 people lost their business capacity in Serbia.
Lawyer and associate of the Initiative for the Rights of Persons with Mental Disabilities MDRI-S Dr. Lazar Stefanović explains that the lives of these people fall into the hands of guardians, who can be family members or, on official duty, social workers of the Center for Social Work (CZSR).
"If there is no one close, then the guardian will be CZSR. That's where the situation becomes even more problematic. When family members are guardians, you have an assumption of a high level of attention that these people will give to their child. When CZSR is the guardian, that doesn't exist," says Stefanović.
He adds that the CZSR does not have the capacity for this, and that persons under their guardianship are usually placed in homes.
"Prisoners in the prison system have significantly greater rights than people deprived of legal capacity in a social welfare institution. I know that sounds controversial, but it is a legal fact," explains the associate of MDRI-S.
Parental fear
Hilda Žužić points out that people with developmental disabilities must not be treated as "some member of the law".
"Before we enter into such a serious procedure, we must be well informed. The CZSR says that it is in the best interest of the child. Is that really so? You don't get an explanation. To me, the essence of the deprivation of legal capacity was presented through 'what if he needs an operation, he refuses, who will sign it'. That's all the information you get," Žužić recounts his experience.
Hilda's big worry, like many parents of children with disabilities, is what will happen when she is no longer there to take care of her son. She is a single mother, has no brothers or sisters, and no living parents. He can rely only on his younger daughter, whom he does not want to force to take care of his brother. The idea that the CZSR decides on the fate of her son, and on the issue of her daughter's inheritance, causes apprehension.
"When I pass away, then my daughter would have to wait for the CZSR to decide what will happen to the property on behalf of my husband Mateja. Will it be sold, will it be divided, what will be done with it. Only then will she have the right to her half," says Žužić.
The law always assumes that a person has an interest in inheriting or owning property. Lazar Stefanović explains that this is a way to prevent abuse.
"A person deprived of legal capacity can be the owner of the property he inherited, but the CZSR disposes of that property. The guardian cannot dispose of the property himself, but must seek approval from the guardianship authority for everything, it is like a kind of commission," he says.
Hilda adds that no one wants to disenfranchise their child who has developmental disabilities, nor does she think any parent would think about leaving nothing to that child.
"We would all like our children to be taken care of. We would also like to be able to close our eyes peacefully. To know that our children will really benefit from that property. Not that someone will take it and the child ends up in a home," explains Žužić.
Practice in Serbia is outdated
In this regard, European practice is significantly different from domestic practice. Emphasis is placed on "supported decision-making", where users of social care services are assigned counselors who work with them, one-on-one, and try to find a solution together.
Photo: Pixels/Kampus Production Social protection in the world is moving towards "decision-making with support"
According to Stefanović, the standards of the United Nations are even more advanced than the European ones.
"They went further, towards the complete abolition of any type of deprivation of business capacity. There is no guardianship authority, and business capacity cannot be taken away so blankly," says Stefanović.
Despite the fact that Serbia has adopted the Convention on the Rights of Persons with Disabilities, which guarantees everyone the enjoyment of business capacity, these standards have not been respected.
In Serbia, there is a possibility of partial suspension of business capacity. However, Stefanović says that in reality there are problems with using this possibility, and that we are still talking about an intrusive practice. He adds that the problem is that these processes in Serbia are carried out automatically - it is not too difficult to deprive someone of their business ability.
"When you have a young person and you take away their business ability, you take away their way to get involved in the community. Today we know, we have excellent examples, that people with intellectual disabilities can work. Of course, in a certain way, with a certain capacity. Work is one of the best ways to be included in society, to feel useful, and even to reduce the burden on the social protection system," concluded Stefanović.
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