Although the Human Rights Ombudsman of the Republic of Slovenia did not recognise in the current legal system any interference with the rights of individuals who claim the right to child care allowance, the Ministry of Labour, Family, Social Affairs and Equal Opportunities warned that interference with the rights of individuals could would occur if individuals were required to fulfil the conditions for the recognition of the right every year, especially in cases in which it is clearly impossible to improve the state of health and thus lose the right.

* * *

The Human Rights Ombudsman of the Republic of Slovenia (Ombudsman) received a warning about the need to change the List of Serious, Chronic Diseases and Conditions (List), which is an annex to the Rules on Criteria for Exercising Rights for Children who Need Special Care and Protection (Rules). In the complaint, it was stated that parents of children with special needs have to go through a huge number of different examinations, therapies, various meetings, and guidance with them every month because of the special situation they are dealing with together with their child. The annual procedures for claiming child care allowance (DNO) represent an additional burden. Children with Down syndrome (DS) were highlighted, in whom, despite the intensive work with them, many associated problems are expected. These begin in early childhood, and often take several years to be discovered and recorded in the diagnosis. The complainants therefore believe that it would make sense if all children with DS up to the age of 6, and from the age of 6 to 18, those who have at least a milder form of disorder in mental or motor development, would receive a lower amount of DNO. In the complaint, it was further pointed out that children with DS have many problems, which often do not fully fit into each of the criteria according to the List, but their sum makes a normal life impossible and causes a series of unpredictable complications, additional costs, and inconveniences. Children with DS mostly have a weakened immune system, congenital heart problems, diabetes, eating disorders, intestinal dysfunction, urinary and faecal incontinence, various glandular dysfunctions, almost all of them without exception have hypotonia, most have vision impairment, hearing loss, obesity, or dementia; testicular cancer, leukaemia, gingivitis, coeliac disease, depression, patellar dislocation, craniocervical instability, and others are common. Various accessories and basic necessities (glasses, shoes, clothes, furniture, home furnishings, etc.) for such children are significantly more expensive. This is mostly due to the phenotypic characteristics of the individual, without taking into account the associated diseases that are expected in the diagnosis of DS.

After several appeals addressed to the Ministry of Labour, Family, Social Affairs and Equal Opportunities (MDDSZ), and with several answers received, the Ombudsman obtained an explanation that amendments and additions to the Rulebook and the List were being prepared, which were in the phase of interdepartmental coordination. The MDDSZ has asked the medical commissions, with whom they cooperate in the preparation of amendments and additions to the Rules and the List, for their opinion on the content of the specific complaint.

The MDDSZ informed the Ombudsman of the opinion of the medical commissions, from which it follows that the current regulation is professionally justified and fair. They state that by the age of three, when all children with trisomy of the 21st chromosome are entitled to the supplement, there is a clinical picture or it is possible to determine whether children have visual impairment, hearing impairment, coeliac disease, a heart defect in the treatment phase, at least a moderate intellectual disability, or at least a moderate mobility disability. Depending on the difficulties, such children, even after the age of three, have the right in the same way as everyone else. The right is extended for different periods of time, as the clinical condition may change, improve, or worsen with supportive treatment. It also follows from the opinion that it would not be an adequate and fair solution, according to which children with trisomy of the 21st chromosome, even if they do not have at least a moderate impairment in mental development, a moderate mobility disability, or impairment of other organ systems, would be placed until the age of 18 among other, severely chronically ill children defined by precise criteria. This would break down the system of identifying severely chronically ill children.

In the opinion of the medical commissions, it is stated that children with trisomy of the 21st chromosome and a mild intellectual disability are not entitled to the supplement, but they still receive regular physiotherapy and speech therapy treatment in the development clinic, support in schooling in accordance with the decision on orientation, the necessary educational support from a special educator, a companion in kindergarten, and the like. Since the above was not even the subject of the complaint and since the continuation of the medical opinion can also be understood differently, the Ombudsman considers that the above is a slip of the tongue, since according to the content of point 5 of the List, DNO is payable for children with DS after the age of 3, even if it is only at least a moderate intellectual disability.

Taking into account the explanations received, namely that by the age of three a child with DS already has a developed a clinical picture and that longer and not just one-year extensions of entitlement to DNO are possible, the Ombudsman assesses that, according to the explanations received, the current regulation does not represent a violation of the rights of the individual, as it treats children with DS after the age of three in exactly the same way as all other severely chronically ill children. The complaint and the opinion of the medical commissions are comparable in that "associated diseases change from year to year" or, according to the doctors' opinion, "the clinical condition can still change, improve or worsen with supportive treatment", according to the Ombudsman constitutes a reason for the ongoing verification of the fulfilment of the conditions for DNO.

With regard to the warning that children with DS face a series of problems that often do not fully fit into each of the criteria according to the List, but their sum makes a normal life impossible and causes many unpredictable complications, additional costs, and inconveniences, the Ombudsman notes that Article 7 of the Rules stipulate that children who have more than three disorders or diagnosed diseases at the same time are entitled to DNO, each of which in itself does not otherwise represent the level of a disorder or disease from the Rules, on the basis of which the child would need special care and protection according to the Rules, and their combination justifies entitlement to an individual right. According to the Ombudsman, Article 7 of the Rules thus solves the problem pointed out by the complainants.

Although the Ombudsman did not recognise a violation of the rights of individuals in the current regulation, according to the explanations known at the moment, the MDDSZ warned that a violation of the rights of individuals could occur if individuals were required to meet the conditions for recognition of the right every year even in cases in which clearly no improvement can occur. According to the Ombudsman's lay judgement, this could represent a permanent determination of eligibility for a child with DS who has already been diagnosed with, for example, a moderate intellectual disability, unless there are expert arguments that even with this type of condition there can be significant improvement. The Ombudsman did not detect such an argument in the responses obtained. The Ombudsman therefore believes that in all cases where a child with DS is recognised as having the right to DNO and professionally it is not possible to expect an improvement in the situation, it is unacceptable for the child and parents to burden themselves with annual procedures for exercising rights. It is probably never possible to rule out a possible worsening of the health condition in the future, but in such cases it would still be possible to recognise the right to a certain extent even up to the age of 18, and subsequently only possible reasons for recognising the right to the payment of a larger amount of DNO would be asserted, if such a significant change were to occur.

The Ombudsman additionally believes that interference with the rights of individuals could also occur in cases where, due to known problems in the health care system, including the lack of certain specialists, the specific problems of an individual child would not be adequately recognised and documented by the child's third year of age. This can be solved in each individual case by using legal means, but above all, it is necessary to ensure that such cases are at most the exception and not the rule at the systemic level.

The Ombudsman continues with the consideration of the complaint in the direction of obtaining accurate numerical data on the number of children receiving the allowance, namely according to the duration of the right, separately for children with Down syndrome and those without it, and obtaining other explanations that would help in determining the possibility of whether in certain cases there may actually be a violation of children's rights. 9.4-5/2024