Every day in the family of Nikolina Crnogorac begins and ends with caring for their son. For them, there are no working hours – it lasts 24 hours a day, 365 days a year.
Their son Nikola is 23 years old and has autism. He finished secondary school four years ago, and his mother describes that period as the most fulfilling part of his life. “He had a routine, responsibilities, support, and a personal assistant. Today, that’s gone,” Nikolina told BBC Serbia. After leaving the education system, he lost the right to a personal assistant, while other support services, although предусмотрed by law, are in practice unavailable or have long waiting lists.
In order to care for him, they had to make a life-changing decision. Her husband, a civil engineer with many years of experience, left his job to stay at home with their son. The reason, she says, was both simple and difficult. Nikola has grown into a strong young man, often with pronounced behavioural challenges that she could no longer manage on her own.
“My child doesn’t stop having autism at 4 p.m.,” says Nikolina. Their daily life today, as she describes it, is a closed circle. “The life of the two of them is constant isolation,” she adds.
Parents like Nikolina have, for years, been calling for the legal regulation of the parent-carer status – something the authorities in Serbia have only recently accepted.
In the media, the adoption of the law has been announced by President Aleksandar Vučić and the line minister Milica Đurđević Stamenkovski, but the procedure is only just beginning. Without day-care centres, personal assistants, home help, or work activities, the burden of care rests entirely on the family, Nikolina believes.
“A parent cares for their child for as long as they live”
Guided by this experience, she is not satisfied with the announced parent-carer law, at least based on how it has been presented in the media.
“It is a pressing necessity. But if a parent has to choose between a job and caring for their child, that is not a choice – it is coercion by the system,” she adds.
Draft law adopted – what does it say?
The draft law on parent-carers is expected to enter parliamentary procedure by 30 June at the latest, previously stated Milica Đurđević Stamenkovski, Minister for Labour and Social Affairs.
A working group has established the draft law, which, after a public debate, should be reviewed by the government and then submitted to parliament, the Ministry announced on 30 March 2026.
However, the full text of the draft law has not been published on the Ministry’s website. It only states that the draft предусматриes a monthly allowance, as well as payment of taxes and contributions for unemployed parents who directly care for their children.
“The goal is clear – to regulate, for the first time, in a comprehensive and sustainable way, the status of parent-carers in Serbia,” the Ministry’s website states. Before publication of the full text, the Ministry did not respond to questions from BBC Serbian about the details of the draft.
The aim is for parents to receive financial security, pensionable service, and social insurance, along with the right to an additional monthly allowance on top of existing benefits, Đurđević Stamenkovski said earlier.
“The state will provide a monthly amount exceeding 100,000 dinars per parent-carer,” she added.
Those “100,000 dinars” actually mean an additional 65,000 dinars on top of what they already receive – i.e. a monthly allowance of around 30,000 dinars. “Is that enough for a dignified life, considering the costs of therapy and medication?” Nikolina asks.
Is the law enough?
Although her son now travels by plane and participates in daily activities, Jelena Petković from Niš never stops thinking about the future. She is a mother of three children, and her son has autism.
Financial support may ease everyday life, Jelena says, but without developed support services, the key problem remains unresolved. For years, the entire family has been working to provide their son with as high-quality and fulfilling a life in the community as possible – yet the question of “what comes next” always returns.
“We try to help him live as normally as possible – we travel together, he attends activities, he is included as much as possible. But if the system does not offer support, I fear that one day he could end up in an institution,” says Jelena, president of the ‘Dan’ association from Niš, speaking to BBC Serbia.
When children turn 18, there is a possibility that, if they have at least one year of work history, they may receive a disability pension, the minister stated. At one of the working group meetings on this law, it was reportedly discussed that one of the conditions for obtaining parent-carer status could be the removal of legal capacity from children once they turn 18, according to parents’ accounts.
For parents like Jelena and Nikolina, this is alarming.
Deprivation of legal capacity means that children lose the right to independently decide about money, medical treatment, place of residence, and employment, they emphasise. Both mothers warn that such a practice could further isolate people with disabilities, increase the risk of abuse, and undermine their dignity.
Instead, Jelena and Nikolina advocate for models of supported decision-making, which preserve autonomy and the right to make one’s own choices.
Not everything has to fall on parents
For Jelena, Nikolina, and many mothers whose children require constant care and support, an example of how families can receive real, practical help comes from the ‘Na pola puta’ association in Pančevo.
This organisation, which supports people with intellectual disabilities and their families, has operated three supported-living flats since 2006.
Users live there in a community and, through a work centre, acquire various skills and work habits necessary for a good quality of life, the association says. Their services are part of the regular social protection system, showing that it is possible to develop community-based support models without placing the entire burden on parents.
For more than seven years in Žitište, a small town in northern Banat, three carers from an association have been visiting families through a Home Help service, assisting children and young people with disabilities in daily activities and hygiene. Supported living services for people with disabilities also exist in Kula and Šabac, the largest town in the Mačva region.
What about the region and the world?
In Croatia, the status of parent-carers is legally regulated and includes a salary, as well as full social and pension protection, according to the Croatian Government’s website.
The allowance amounts to €663.61 per month, €796.34 if the person cannot participate in community life due to their condition, or €995.42 for a parent caring independently for two or more children.
Montenegro has a social protection system that includes a personal disability allowance, care and assistance allowance, and child benefit.
However, there is no formal parent-carer status as in Croatia. The allowance for parents or guardians of beneficiaries of personal disability support is around €193 per person cared for, while the total disability allowance can reach up to €224 per month.
Germany has one of the most developed support systems for carers in Europe. In addition to mandatory long-term care insurance, since 1 July 2025, parent-carers have been entitled to up to eight weeks of respite care per year. If a family member is cared for at home, the family receives a monthly care allowance ranging from €347 to €990.
The Swedish model traditionally relies on public responsibility for care, with municipalities legally obliged to provide services for the elderly and people with disabilities.
Financial support, however, is not universal.
It can amount to around €450, but each municipality independently decides whether to offer the programme, under what criteria, and in what amount.
Sweden’s key advantage is its developed public service infrastructure – home care, day centres, specialised institutions, and personal assistance for people with disabilities – which reduces the burden on parents.
Community support is key
With proper support, parent-carers can ease everyday life and enable their children to live as independently and as fully as possible, Nikolina and Jelena say.
Programmes such as personal assistants, community living arrangements, and supported decision-making show that a good quality of life is possible without constant reliance on parents.
Otherwise, the most difficult question remains – what will happen to the children when their parents are no longer there?
“No human being can endure continuous work in three shifts – not even a parent, whether employed or unemployed, no matter how strong their sense of purpose, or how driven they are by love, sacrifice, and care,” Nikolina concludes.
(BBC Serbia, 01.04.2026)
https://www.bbc.com/serbian/articles/c87wdq8xrxro/lat