There is money for the dolphinarium, but not for personal attendants

The applause starts, the boy in front of me covers his ears with his hands. One hears from the crowd: "Maybe it would be smarter not to use whistles, for the sake of the children." Around us, blue balloons and banners with inscriptions:Autism it doesn't hurt, ignoring hurts"; "We're not the same, they're better"; "You're stealing from us too". These messages marked the protest of parents of children with autism, held 2. April, on World Autism Day.

Why did the parents protest? One mom read an open letter on behalf of parents and pointed out a number of problems.

"Enact the Parent-Caregiver Law, provide systemic health, social and educational support for our children from an early age, not only on paper but also in practice, provide them with a personal assistant service, open work centers, include them in community life according to their capabilities...", she enumerated.

Katarina Aćimović was at the protest. "This is like a kind of exit for us," he told "Vreme". Her son has autism and is in second grade at a special school, and she should be back at work soon. They need a personal companion for the child.

"We applied seven months ago in the hope that we would receive it in a year. We still haven't received an invitation. And I don't expect it, I expect it for my child's third grade," concludes Aćimović.

On the other hand, Stefan, Biljana Filipović's son, finished elementary school and is now going to high school. Filipović says that they have been waiting for the service of a personal companion for six years.

"For those six years, you have to manage," he explains. "If you want your child to go to school, you will accompany him if you have the opportunity or you will pay for the companion. Families are exhausted financially and organizationally, because it is absolutely impossible to achieve everything - not only with average incomes, but also with higher ones - if you do not have understanding from the employer, from colleagues. We are people who face being called from school or from kindergarten and they say 'the child is upset, please come and pick him up'. This is a situation in which you have no choice, and systemically, there is very little that stands as support", explains Filipović.

The lack of personal companions is one of the biggest problems for parents of children with autism. Why is there such a long wait for a personal companion?

PERSONAL ACCOMPANIMENT

The personal escort service is organized by local self-government units. However, according to the report of the Republic Institute for Social Protection, during 2021 this service was present in only 95 municipalities in Serbia, which is 59 percent of the total number of municipalities.

"Due to the lack of financial capacity for all children to automatically start using the service that is estimated to be in need of them, a waiting list is being formed," reads the website of the humanitarian organization "Dečje srce", which provides the service of a personal companion in the territory of Belgrade.

"The waiting list is formed according to criteria, where priority is given to single-parent families, families that have more than one child with developmental disabilities, as well as children with I and II degrees of support, all according to the date of application to the parent Center for Social Work", they state.

In Belgrade, where there is the largest number of children with autism, this service is financed by the city's Secretariat for Social Welfare. From 2016, when the Secretariat announced the first public procurement for the service of a personal companion, until the last procurement in October 2024, only "Dečje srce" appeared as the only bidder.

We asked the Secretariat for Social Protection why the public procurement for a child's personal companion was written so that only one bidder always applied for it, as well as why the Secretariat did not set the conditions for public procurement so that another bidder applied for the procurement? Until the conclusion of this issue of "Vremena", we have not received an answer.

...

The number of provided personal companions in Belgrade has grown over the years - from 250 in 2016 to the current 1010 personal companions. The amount of money that the city allocated to the "Children's Heart" also grew - from 129,5 million in 2016 to a tenfold higher amount in 2025 - 1,29 billion dinars. In total, in nine years, at the current exchange rate, "Dečje srce" received 36,8 million euros, or 4,32 billion dinars, for this service.

The Secretariat for Social Protection of the City of Belgrade states that 1010 personal attendants are currently employed, with a price of 607 dinars (gross) per working hour. According to our knowledge, attendants receive 335 dinars (net) per working hour, according to the Contract on temporary and occasional jobs.

We asked "Dečje srce" according to which contract the attendants were hired, as well as the price of the work. Until the conclusion of the text, we did not receive an answer.

"Vreme" contacted a dozen personal followers who are engaged in "Dečje srcu". For fear of losing his job, only one agreed to answer the questions, and that too anonymously.

This personal companion tells "Vreme" that the engagement is paid only for the amount of time they spend with the child.

"That is, if the child gets sick and is not in school or kindergarten, it will not be paid. The same applies to holidays - you are unpaid for every holiday, every vacation is unpaid for you. If you get sick, you do not have the right to sick leave", emphasizes the companion. He adds that "Dečje srce" says at the introduction and education for followers that, if they get sick or are prevented from coming to work that day, they should report so that the child could possibly get a replacement.

"However, in practice, it is far from that. For them, this information mainly serves to let them know that you were not at work and that you will not be paid for it. So, the child never receives a replacement or compensation for those few days or however long you are away," emphasizes the companion.

We asked "Dečje srce" if this is true and, if so, why it is happening. Until the conclusion of this issue of "Vremena", we have not received an answer. The follower says that last year, for 23 working days, the maximum salary was 51000 dinars. He further explains that he does not know if there are people who do extra work and work as attendants at the same time, because shifts change very often. "A lot of parents expect a personal companion to be there for six or eight hours, so the companions don't have time for other work," says the companion.

Very often, the companion explains, parents also bear this financial cost by paying extra to the base that the companion has from "Child's Heart". And this is an additional burden on the parents' budget, which is already overburdened by paying for additional treatments, doctors and activities.

"Dečje srce", owner of buildings and plots

Today, the humanitarian organization "Dečje srce" has several buildings and plots of land in the cadastre in Serbia. They are the owners of a commercial space-studio in Nebojšina Street in Belgrade, a family residential building and a part of a plot in Subotica, as well as a family residential building, auxiliary buildings and a part of a plot in the municipality of Čajetina.

According to data from the financial reports of this organization, "Dečje srce" did not own any real estate before 2018.

We asked "Dečje srce" how they acquired this property and by the time this issue of "Vremena" was closed, we had not received an answer.

WHAT AFTER SCHOOL?

Biljana Filipović tells "Vreme" that most parents are desperate, because when they finish high school, their children cease to exist for the system.

"They remain to exist only for their families. Very few of them will manage to get a job. These are really the ones who are highly functional", says Filipović.

Snežana Maksimović, the mother of a young man with autism, tells "Vreme" that by law, people with autism can stay in day care centers until the age of 26.

"There are users in day care centers even at the age of 40 because they have nowhere to go. I think about what my child will do after the age of 26, because they cannot be alone at home, they need some kind of activities. In the day care centers they have physical activities, they work on social skills again, they make sure they don't forget hygiene habits," she says.

Mikica Petronijević, the father of a young man with autism and the founder of the humanitarian organization "Scrolls in the Dark", told Vreme: "Mihajlo finished elementary school on Južno Boulevard and there is still nothing for him. They don't get better after finishing school, they don't move, they don't disappear, and the state doesn't offer any facilities for them."

In Belgrade, there are several examples of places where people with intellectual disabilities work, such as "Lica ulica" or "Naše kuća". One example is the cafe and work center "Sounds of Hearts", as part of the Humanitarian Organization "Dečje srce".

The "Vremena" journalist was warmly welcomed by the young people in the "Sounds of the Heart" cafe. On the menu it was written: "The cafe works on the basis of donations. Guests are able to contribute as much as they want for the selected drink."

In the cafe, you do not receive a bill for the service provided or the product purchased.

According to our knowledge, young people in that center volunteer or receive very low compensation for their work.

We asked "Dečje srce" what is the price of an hour of work at the "Sounds of the Heart" cafe in Belgrade, what kind of contract are the young people who work there and why we do not receive an invoice for the service. We have not received any answers until the publication of the text. This kind of cafe, "Zvuci srca", still exists in Subotica, Pančevo and Niš.

PERSONAL ASSISTANT - UNATTAINABLE DREAM

Since the "child's personal companion" service is prescribed under the condition that the child is included in an educational institution, that is, a school, it is also foreseen that this service ends with the completion of secondary school. After that, people with autism - if they are not able to take care of themselves independently and participate in the activities of daily life in the community, or they can, but with the physical presence and help of another person - should receive the service of a personal assistant. However, this is usually not the case.

Snezana Lazarevic, executive director of the Initiative for the Rights of Persons with Mental Disabilities MDRI-S and mother of a young man with autism, tells "Vreme" that the service of a personal assistant is one of the most important for people with disabilities.

"This is so according to the Convention on the Rights of Persons with Disabilities and General Comment No. 5 of the Committee on the Rights of Persons with Disabilities, because the point is that they get the support they need. For example, if I can't move my arms, so I have a problem, I can't dress myself, that assistant will dress me. If I can't walk, they will help me with movement. If I need help with communication, then a personal assistant will do that," explains our interlocutor. He goes on to say that nowhere in the regulations does it say that people with mental disabilities do not have the right to assistance, but it says something else that is interpreted that way.

"The regulation on the basis of which service providers are licensed also prescribed the target group for personal assistance, and it says that persons with disabilities who have an increased allowance for someone else's care and assistance have the right to assistance. Only people who are assessed to have 100 percent disability receive that increased allowance," she says.

Lazarevic adds that another condition for exercising the right to a personal assistant is employment, or that a person with a disability is attending regular schooling, or that he is a member of an association or political party, that is, actively involved in various forms of social engagement.

"How am I going to get a job or become a member if I can't go there? I guess the prerequisite is to get help first, and then maybe I'll get a job," she wonders.

The third condition is that someone has the ability to make independent decisions, Lazarevic points out.

"People often confuse business capacity with work capacity. Business capacity is actually the ability to make independent decisions about rights and obligations. A fully business-capable person can, by his own declarations of will, assume rights, accept obligations and enter into various legal relationships. Very often people with intellectual disabilities are deprived of business capacity, they are assigned guardians and then that guardian makes decisions on their behalf. Then, for these reasons, they do not have an assistant."

Prof. Dr. Milica Pejović Milovančević, a child psychiatrist from the Faculty of Medicine in Belgrade and the Institute for Mental Health, tells "Vreme" that the problems for the families of these people start from the earliest days:

"There is a huge burden on the family and all that can be done is to help them. That's why I sincerely support all parental initiatives, their requests to change the law, the establishment of new institutions where these children and young people could stay, the use of various services. It is especially difficult for the parents of adults with autism because there are very few opportunities for them and in some years of late adolescence or adulthood they are completely left to their families", she emphasizes and adds that social care should be improved and focused "not only on people with autism but also on their families and for life".

AND WHAT IS THE STATE DOING??

When asked what the system provided for them and their family, the parents we talked to said out loud - the system is nothing, but the individuals from the system are a lot, it depends on who was lucky.

Biljana Filipović says that too much has been put on the family's back.

"If you don't have the intellectual, financial, or educational opportunities to find your way in that forest of systems, you won't make it," emphasizes this mom.

The National Institute for Early Child Development and Inclusion is under construction on Bežanijska Kosa in Belgrade, at Dr Hugo Klajna Street number five. The Government of Serbia decided to establish this Institute, and the construction was announced in 2021 by the wife of the President of Serbia, Aleksandar Vučić, Tamara Vučić.

She previously stated that between 20 and 22 million euros will be invested in this Center. However, as can be seen from the building permit, the estimated value of the building is actually 34,1 million euros.

The Institute for Early Development and Inclusion, whose working name is "Beauty of the World", will have a swimming pool, physio rooms, sensory rooms, training centers, a mini zoo and a snack bar.

It was announced that the Institute will receive its first users by the end of 2024, but it is still not open. When the "Vremena" reporter was in the field, she found workers planting flowers in the courtyard of the complex. On the approach to the front door, there are two metal fences that prohibit further passage. This building still does not have a use permit. The Institute did not answer the questions of "Vremena" - how this institution will solve the problems of children and families from the interior, as well as when it will actually be opened.

"The Institute for Early Child Development was conceived as an institution that provides a comprehensive approach to early child development, as a 'one stop shop' for all issues and interventions related to early development," says Prof. Dr. Pejović Milovančević. He adds that the Institute will not specifically deal only with children with autism, but with all children with various developmental delays.

"When it comes to autism spectrum disorders, there will be safe early diagnosis, as well as the inclusion of children in early interventions, where their parents will also have the possibility of therapeutic interventions based on the principle of family-oriented early interventions. The Institute will deal with children until they start school, up to the age of eight, and the basic principles of the Institute's work will be a child-based, family-centered approach - based on the strengths, priorities and affinities of parents, guardians and children. One plan will be defined for one child and one family". explains Pejović Milovančević.

Apart from this, there is another state project, within the specialized exhibition EXPO 2027, and it was announced by Aleksandar Vučić. It is about the construction of a dolphinarium:

"They say that nothing affects children with autism and similar diseases better than therapeutic dolphins," said the president of the state in June 2024.

"Autism is not a disease, autism is a condition," says mother Snežana Maksimović. According to her, people with autism are absolutely invisible, and she gets the impression that they are even undesirable for the system.

Aćimović calls on the state to provide a companion to every child who needs one.

"A companion is definitely more useful than the dolphins that the president promises," says this mom. "They are already provided by law to support the child in functioning, coming and going to school, learning, helping with communication and socialization with other children. They are building stadiums in a country where we are denied basic, legally guaranteed health care, because the law guarantees physical and mental health care to every citizen."

And he concludes: "Everyone is talking about early intervention, which according to neuropsychiatrists from our state institutions, for example the Institute of Mental Health, implies a minimum of three speech therapy and defectology treatments per week, and at the state health center you can get three treatments per month. Parents allocate a minimum of 70000 dinars per month just for those treatments, which is more than someone's salary, and where are the other costs, because children with autism, like mine, often have associated diseases, the treatment of which requires large costs."

How many people with autism are there in our country?

The basic part of any rational program that strives to adequately support children with disabilities and/or disabilities and monitor their status is the Register of Children with Developmental Disabilities, according to the Unicef ​​website.

Biljana Filipović, the mother of a boy with autism, told "Vreme" that it is difficult to say that the state wants to deal with children with autism "when it doesn't even know how many there are". "We have a situation where every year we celebrate the Day of People with Autism, release balloons, and the state does not know how many children there are," says Filipović.

The registry of children with developmental disabilities in Serbia was created only in 2022. According to the data of the "Dr. Milan Jovanović Batut" Institute for Public Health, in the database of the Register of Children with Developmental Disabilities until April 10, 2025, 5261 children under the age of 18 with some developmental disability were recorded, of which 2218 children (42,1 percent) were diagnosed with autism spectrum disorders.

According to data from the World Population Review, there are an average of 100.000 people with autism out of 924 inhabitants in Serbia. Since Serbia has 6.623.183 inhabitants, the total number of people with autism would be 61.198.

Prof. Dr. Milica Pejović Milovančević told "Vreme" that the Register is very well designed, because it records not only whether someone has a diagnosis, but also what the functionality of a person with a developmental disability is (and autism is only one of the developmental disabilities). "However, despite the existence of the Registry, the registration response is relatively weak. As a rule, a person should be registered in the Registry by a selected pediatrician, i.e. the doctor who sees the child. Once registration in the Registry becomes a standard procedure for all of us, we will be able to accurately answer (how many people have autism)," explains Prof. Dr. Pejović Milovančević.

Personal escorts in Serbia

Danijela Savić, the mother of a sixteen-year-old boy with autism, tells "Vreme" that they have been fighting for a personal companion for years in Vranje.

"When Bogdan started school, the service of a personal companion was not well regulated. They were hired through the city, but the city did not pay them. The payment was late for two years," says this mother.

"We fought for years until we received from the Ministry that every local self-government should be financed by project for this service. Again, it is insufficient. It was 20000 dinars, then 25000, I think it is now 30000 dinars for the work of a personal companion. Of course, there are not enough companions for children, that is, those who want to do that work. The waiting list is long."

Savić explains that the City of Vranje introduced this year that parents pay a five percent co-payment. Those five percent are calculated from the total earnings of the family, and as earnings they also included other people's care and help.

"Other people's care and help is not money. It is the child's right, given that he has such a developmental problem," emphasizes Savić.

He further reminds that usually one parent is prevented from working because of a child with a problem, and sometimes both, which affects the total earnings. "And, then, from other people's care and assistance and other income, a total of five percent is paid for the service of the child's personal companion," concludes Savić.

There are followers in Niš. However, the interlocutor of "Vremen", who worked as a companion in Niš and who wished to remain anonymous, says that in Niš the service is provided by the Center for the provision of social care services "Mara", which is a day care center for the provision of social care services.

"The salary is minimal and therefore it is very difficult to live on it. It is paid by the hour and there are working hours of four and eight hours, according to the contract on temporary and occasional jobs," explains the companion.

Miloš Ranđelović, director of the "Mara" Center, told "Vreme" that the hiring of a child's personal companion is coordinated with the decision of the city with a contract for a certain period of time, i.e. for one year, because the competition is announced every year.

That is, they are engaged under the Contract on temporary and occasional jobs.

When asked what the price of a working hour is, Ranđelović states that they pay according to the decision of the city, and that on a monthly basis it is slightly more than the minimum.

The text was created within the Academy of Journalism program organized by the Belgrade Open School