In December 2011, the United Nations General Assembly declared 21 March as World Down Syndrome Day. This year, the focus of the international NGO EDSA (European Down Syndrome Association) is on health equity. "Health equity means that everyone has the right to enjoy the highest attainable standard of health without discrimination. Article 25 of the UN Convention on the Rights of Persons with Disabilities specifically refers to the right to enjoy the highest attainable standard of health without discrimination on the basis of disability," stresses Ombudsman Peter Svetina.
Due to the specificities in the development of people with Down syndrome, the need for various examinations, therapies and other activities is already evident at an early age, warns Ombudsman Svetina. These are largely at the parents' expense, even though they are defined by law as free of charge, but there are not enough of the necessary specialists in the public service network. Parents are additionally burdened each year with the procedures for claiming the care allowance, even though the circumstances for claiming this entitlement do not change due to the permanence of the diagnosis. The Ombudsman also notes that it often takes several years for associated problems, which can develop early despite the best efforts of parents and professionals, to be properly identified and defined in the medical records which form the basis for the definition of the various entitlements.
The Ombudsman is therefore actively working to improve the situation of children with Down syndrome. For example, it is currently working on an initiative concerning the application of the care allowance. It considers that the amendments should take into account both the relative slowness with which all problems are identified, not least because of the severe shortage of different professionals, and the fact that medical methods cannot reduce the need for third-party assistance for children with Down's syndrome. The Ombudsman also considers it uneconomic and unreasonable that the Commissions decide on the rights of children with Down syndrome every year, even though the diagnosis is lifelong and as such remains unchanged.
He is aware that since last year, the Ministry of Labour, Family, Social Affairs and Equal Opportunities (MoLSAE), in cooperation with the medical commissions that give opinions to the social work centres or the Ministry in the procedures for claiming rights for children in need of special care and protection, has been preparing amendments and additions to the Regulation on the criteria for claiming rights for children in need of special care and protection and to the List of severe, chronic diseases and conditions.
The Ombudsman expects that the Ministry of Labour and Social Affairs will regulate the procedures as soon as possible and, above all, in a common-sense way and supported by sound arguments, in a way that will not place an additional burden on the parents of children with Down's syndrome, as well as on other competent institutions, every year again. "If the state facilitates rights, it must also establish the pathways for the realisation of these rights," says Ombudsman Peter Svetina. "We need to ensure that the rights of all children with Down's syndrome are respected and that they are respected.
