World Prematurity Day at KROKODIL Center and Discussion “When the most vulnerable remain invisible” – On the importance of legalizing the status of informal caregivers/parent caregivers

13 Nov World Prematurity Day at KROKODIL Center and Discussion “When the most vulnerable remain invisible” – On the importance of legalizing the status of informal caregivers/parent caregivers

Dear friends, dear parents, dear children, we invite you to join us on Monday, November 17th at 6:00 PM to mark World Prematurity Day at the KROKODIL Center. This is the seventh year in a row that we are observing this special date, and this year, we have many compelling reasons to dedicate it to a discussion about the importance of legalizing the status of informal caregivers/parent caregivers; and the necessity of enacting legal measures to regulate this area and ensure a minimum level of dignified living for children, as well as for adults with developmental disabilities and their caregivers/parents.

We will discuss this infinitely important topic with Marija Končar Ršumović, who manages the Instagram page “Pitajte defektologa,” Ana Knežević, president of the “Evo ruka” Association, Snežana Lazarević, Executive Director of the Initiative for the Rights of People with Mental Disabilities MDRI-S, and Elena Premate, an activist for women’s and disability rights and an informal caregiver.

Join us on Monday, November 17th at 6:00 PM at the KROKODIL Center and become part of this important conversation that empowers the community and promotes understanding for children and adults with developmental challenges and disabilities.

Twelve years have passed since the first proposed law aimed at regulating the rights of parents caring for children with disabilities, yet the status of informal caregivers/parent caregivers remains unresolved. Many parents are forced to perform their most important life task without adequate income, healthcare, or security for a future pension. Of course, this role is the continuous care of a child (and later an adult) with developmental challenges.

What happens to these people and their guardians when they can no longer rely on personal assistants, education, and systemic support?

Who covers the enormous costs of therapies, exercises, and other medical, developmental, and speech treatments that must be regularly paid?

What happens when caregivers, burdened by age, become tired and exhausted, left to fend for themselves as best as they can?

What should be done when authorities persistently ignore pleas for help or show little willingness to initiate dialogue with citizens, associations, and legal professionals, in order to form working groups to develop laws or adapt existing ones?

Back in 2009, Serbia ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) and officially adopted the obligation to support families in providing care without discrimination. From this legal framework, the demand for the “parent–caregiver” status later emerged. Even at that time, some efforts were made within institutions to find solutions. For example, the Office of the Protector of Citizens reported that in 2009 they proposed introducing a special allowance for families with severely ill children through amendments to the Law on Financial Support to Families with Children. However, this idea was shelved due to a lack of cost estimates.

A more widespread and visible wave of voices advocating for improving the status of parents with children with developmental disabilities or other health conditions came at the end of 2012 from Novi Sad. The “Život” (’’Life’’) association launched an initiative and petition to introduce such a status, and by January 2013, the Deputy Protector of Citizens publicly supported the solution and arranged a working meeting with parents.

In the spring of the same year, approximately sixty-one thousand signatures reached the National Assembly, with joint pressure from associations and the ombudsman to put the proposal on the agenda. Unfortunately, it remained without further progress. Promises, roundtable discussions, and occasional media statements followed, but no systematic movement was made on a national level.

Soon, some local governments started to “patch” legislative gaps in the system. Sremska Mitrovica, on August 27, 2024, made a decision to grant the status and pay a minimum wage with contributions; subsequently, Leskovac adopted a similar decision at the end of December 2024, and in 2025 it began issuing first decisions. Kula started accepting applications from parents in March 2025.

In September 2025, Bor went the furthest – their city decision introduced a compensation equal to the national minimum wage, including contributions, with a clear implementation date of January 1, 2026.

Meanwhile, at the national level, the situation appears quite different. In early October 2025, most MPs refused to include the “Parent–Caregiver” Law proposal on the agenda. Following this, the Ministry of Labor opened a “dialogue to improve the status” on October 21, and on October 22, parents organized protests in front of the Government of Serbia.

On World Premature Day, numerous parent associations, professional organizations, companies, and individuals around the world participate in raising awareness. Since 2011, this day has been included in the World Health Organization’s calendar as a day to raise awareness of all the challenges faced by premature babies and their families. 

One in ten babies is born prematurely worldwide. Each year, about 15 million babies are born early. In Serbia, more than 4,000 such babies are born annually. Premature birth is defined as delivery three or more weeks before the due date. It is a serious health issue, and many babies lose the battle for life. Babies born prematurely often face problems with the respiratory system, hearing, vision, speech, motor skills, and numerous developmental difficulties. On average, premature babies spend the first 50 days of life in the Neonatology Institute.