Is the state skimping on the most vulnerable?

After months of stagnation in the work of social and medical commissions, oncology patients and parents of children with autism have begun to receive decisions that they have been rejected for state assistance.

The decisions justify this position with the new Rulebook on detailed conditions for the realization of basic material benefits from social and child protection and medical indications for the realization of the right to material security, care and assistance allowances, personal disability allowance and compensation for half-time work.

Non-governmental organizations that represent the rights of the most seriously ill patients, as well as children with autism, warn that the problem is not solely in the individual assessment of the commission, but in the Rulebook, which, they say, "systematically eliminated the most vulnerable categories of patients."

They also point out that they are concerned about the fact that the commissions are not meeting, which, they claim, has prevented users from exercising their rights, "which has left them stranded."

From the Ministry of Social Welfare, Family Care and Demography, headed by Damir Gutic, say that children and people with autism are not disadvantaged, but they did not answer questions regarding oncology patients. They said that during 2025 they had meetings with parents of children on the autism spectrum, emphasizing that they believe that the new Regulation does not disadvantage them.

Gardašević: Institutional erasure of the most seriously ill

Director of the non-governmental organization (NGO) "Breathe" Maja Gardašević She told "Vijesti" that "the biggest problem is that the new Regulations have practically erased oncology patients from the medical indications for exercising their rights."

"In the previous regulation, malignant neoplasms were clearly recognized, even in the terminal stages of the disease, while in the new document they are no longer recognized. This means that today a person undergoing chemotherapy cannot function independently, eat, maintain hygiene or get out of bed - they are no longer recognized by the system as a person who needs someone else's care and help," Gardašević said, adding that this is not a reform of the system, but an institutional erasure of the most seriously ill people.

They point out that they are particularly concerned that doctors on the committees claim that they are "bound" by the new Regulations, and that in the case of oncology patients "they practically have to give negative opinions, because cancers are no longer clearly stated as a basis for exercising rights."

"The most dangerous thing is that real human lives are hidden behind administrative formulations. A rejection is a piece of paper for the state, but for the patient's family it means the inability to pay for care, therapy, transportation, or basic living conditions. When the state deletes malignant diseases from the regulations, then the problem is not just the administration, the problem becomes the policy of relations towards seriously ill people."

Gardašević also told "Vijesti" that they have contacted the relevant social sector several times and through various initiatives. She claims that they have also submitted specific examples of patients, medical documentation, and family experiences to the relevant ministry, emphasizing that they have also warned that the Regulation will lead to the rejection of oncology patients.

"Unfortunately, instead of a substantive discussion and appreciation of the problem, we have the impression that the warnings have been ignored. Institutions must not skimp on the most seriously ill citizens. If the state skimps by removing oncology patients from the right to other people's care and assistance, then we must openly say that this is the wrong and dangerous direction of social policy," she said, adding that there was no substantive response or reaction.

Laković: Savings on the most vulnerable

He also believes that the decisions of the commission for the allocation of other people's care and assistance also affect another vulnerable category of society - children and people with autism. Goran Laković in front of the NGO "You Are Not Alone".

"There are many cases of children with autism who were previously denied personal disability benefits. Most of them only received these rights at second-instance commissions or after court rulings. What has particularly concerned us recently is the lack of sessions of these commissions, which has prevented beneficiaries from exercising their rights, which has left them stranded. Although we have statements from the minister that no one will be denied their rights, the reality is that some people have been waiting for their rights for more than 10 months, so we wonder whether the minister, in addition to the law, will also grant a time machine to make up for that lost time," said Laković.

The experiences that parents of children with autism share with representatives of "You Are Not Alone", Laković points out, show that "someone in the state remembered to save money on the most vulnerable".

He also says that they had several meetings with the relevant ministry:

"I think it would be better if there wasn't any, because it was all just a huge waste of time that we, as parents, can't make up for."

The responses of the authorities to the questions of NGOs and parents, Laković points out, mainly came "through the media".

"Due to the 'administrative treatment' of autism by socio-medical commissions, less than a month ago we nominated the relevant ministers for the Nobel Prize in Medicine. Since the candidacy is official, we expect a response from the Nobel Committee by May 20th, which would be the most beautiful gift on the occasion of 20 years of independence of Montenegro... If the Committee decides negatively, there are other institutions that deal with cases when several people join forces to deny someone basic human rights," said Laković.

The Ministry, however, says that the new rules have enabled broader access to rights and eliminated certain problems that previously existed in practice.

"The focus of the changes was precisely on enabling the realization of rights for a larger number of children on the autism spectrum, especially those who were previously unable to achieve status due to the way their body damage was assessed, as they had 90 percent body damage."

The regulation, which was adopted last December, was amended in mid-January, but the conditions for exercising the right to personal disability benefits for children on the autism spectrum, according to the social services, have not changed.

"When it comes to children and people on the autism spectrum, the right to personal disability benefits is now also available to children on the autism spectrum with 90 percent impairment, while until December 2025 the requirement was 100 percent impairment. This also solves the problem faced by children with a diagnosis of F84.9, or unspecified autism, who were previously unable to exercise their right to personal disability benefits, and their parents are entitled to compensation for working half of their working hours," the competent department said, adding that the Ministry is "currently implementing a comprehensive reform of the disability assessment system."

Laković: Parents find temporary foster parents themselves

Laković also told "Vijesti" that "an example of the 'care' of the authorities is the institute of temporary foster care."

"Every parent of a child with disabilities has the right to find a foster parent for 45 days a year. In addition to being caregivers, speech therapists, special education teachers and doctors for our children for years, the state now expects us to be a 'labor bureau' - to search for, select and motivate staff who will work for an incredible 17 euros per day. We don't know how they came up with that figure - maybe with a lunch that cost 16,99 euros or through the cost of fuel that an employee spends for a few hours driving a company car," he said.