downov sindrom ni bolezen, je pa za vedno. / down syndrome is not an illness, but forever

V Sloveniji otroci z Downovim sindromom kljub temu, da gre za trajno genetsko stanje, ne prejmejo samodejne odločbe, ki jih zakonodajno opredeljuje kot otroke s posebnimi potrebami. O njihovem statusu komisije odločajo vsako leto znova in pri tem subjektivno presojajo, ali je njihova motnja »dovolj zahtevna«. Starši so tako vsako leto znova soočeni z obsežno birokracijo, stresnimi postopki in negotovostjo, čeprav je takšno odločanje povsem nepotrebno in neučinkovito – tako za družine kot za državo.

Projekt Downov sindrom ni bolezen, je pa za vedno, ki ga je izvajal Zavod ZON.si, je naslavljal to sistemsko nepravičnost z zagovorniškim prizadevanjem za spremembo zakonodaje, natančneje Seznama kroničnih bolezni in stanj, tako da bi vsi otroci z Downovim sindromom do 18. leta starosti odločbo prejeli avtomatsko, brez vsakoletnih komisijskih postopkov in birokratskih zapletov.

Kaj smo dosegli

• Pripravljena je bila analiza stanja otrok z Downovim sindromom v Sloveniji, ki je prvič sistematično zbrala razpoložljive podatke in jasno pokazala pomanjkanje uradnih statistik na nacionalni ravni.
• Dosežena je bila vsaj 10-odstotna rast ozaveščenosti o Downovem sindromu, kar potrjuje primerjalna anketa »prej–potem«.
• Tema pravic otrok z Downovim sindromom je bila obravnavana v najmanj 19 medijskih objavah v nacionalnih in regionalnih medijih ter dodatno podprta z 22 lastnimi objavami na družbenih omrežjih.
• Vzpostavljenih je bilo več kot 10 novih sodelovanj med starši, organizacijami in institucijami, tudi preko 6 regijskih posvetov in 6 srečanj delovne skupine.
• Neposredno je bilo podprtih več kot 100 družin, ki so koristile svetovanje, informacije ali podporo pri uveljavljanju pravic.
• Pripravljen in na Ministrstvo za delo, družino, socialne zadeve in enake možnosti poslan predlog spremembe pravilnika, ki je vstopil v medresorsko obravnavo.
• Dosežen je bil konkreten upravni premik v praksi, saj se je v času kampanje začelo podaljševanje odločb o dodatku za nego otroka na tri leta, zavrnitve pa po poročanju staršev niso več zaznane.
• Projekt je sprožil odziv na najvišji politični ravni, vključno z javnim odzivom predsednika Vlade RS in obravnavo pobude na portalu predlagam.vladi.si.

Prispevek k indikatorjem programa Impact4Values

• Število izdanih publikacij: 10
• Število ozaveščevalnih kampanj: 1
• Število udeležencev aktivnosti: 218
• Število oseb, ki so koristili vaše storitve (npr. svetovanje, pravne nasvete, izobraževanja): 10

Projekt »DS ni bolezen, je pa za vedno« povezuje Zavod ZON.si, Društvo Sožitje Hrastnik in Hrvatsko zajednico za Down sindrom pri izmenjavi dobrih praks ter krepitvi podpore družinam otrok z Downovim sindromom. Z izmenjavo izkušenj projekt odpira prostor za bolj pravične rešitve, izboljšave zakonodaje ter večjo vključenost otrok in mladih z Downovim sindromom. V okviru projekta so partnerji izvedli več delovnih srečanj, primerjali zakonodajo in podporne sisteme ter pripravili načrt za prenos uspešnih hrvaških praks v slovensko okolje.

Osrednji dogodek projekta je bil dvodnevni mednarodni pilotni dogodek – Mednarodna sobota, ki je povezal dve slovenski in dve hrvaški družini. Skozi delavnice, skupinske aktivnosti, okroglo mizo in izmenjavo osebnih izkušenj so partnerji oblikovali smernice za prihodnja čezmejna srečanja ter okrepili medsebojno povezovanje družin. Projekt je pomembno okrepil kapacitete sodelujočih organizacij, povečal prepoznavnost tematike v medijih ter postavil temelje za redna letna srečanja, ki bodo dolgoročno prispevala k boljšemu razumevanju in podpori osebam z Downovim sindromom na obeh straneh meje.

Prispevek k indikatorjem programa Impact4Values

• Število izdanih publikacij: 1
• Število ozaveščevalnih kampanj: 1
• Število udeležencev aktivnosti: 26

Projekt DS ni bolezen, je pa za vedno povezuje Zavod ZON.si in hrvaško Udrugo Sidro pri krepitvi zagovorništva za pravice otrok s posebnimi potrebami ter drugih ranljivih skupin. Organizaciji sta na tridnevni delavnici v Zasavju izmenjali izkušnje, dobre prakse ter konkretne zagovorniške pristope, s katerimi je mogoče vplivati na zakonodajo in javne politike. Poseben poudarek je bil namenjen pripravi učinkovitih medijskih kampanj, učinkovitemu sodelovanju z novinarji ter razumevanju vloge medijev pri vplivanju na zakonodajne spremembe.

V projektu so nastale smernice za izvedbo medijske kampanje, pripravljene v slovenskem in hrvaškem jeziku, podpisano je bilo pismo o nameri o dolgoročnem sodelovanju med obema organizacijama in vzpostavljen temelj za nadaljnje čezmejne projekte, usmerjene v zagovorništvo ter podporo najbolj ranljivim skupinam.

Prispevek k indikatorjem programa Impact4Values

• Število izdanih publikacij: 1
• Število ozaveščevalnih kampanj: 1
• Število udeležencev aktivnosti: 5
• Število oseb, ki so koristili vaše storitve (npr. svetovanje, pravne nasvete, izobraževanja): 4

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In Slovenia, children with Down syndrome, despite it being a permanent genetic condition, do not automatically receive an official decision that legally classifies them as children with special needs. Instead, commissions reassess their status every year, subjectively determining whether their condition is “severe enough.” As a result, parents are repeatedly confronted with extensive bureaucracy, stressful procedures, and uncertainty, even though such decision-making is entirely unnecessary and inefficient—for both families and the state.

The project Down Syndrome Is Not a Disease, but It Is for Life, implemented by Zavod ZON.si, addressed this systemic injustice through advocacy aimed at changing legislation—specifically the List of Chronic Diseases and Conditions—so that all children with Down syndrome would automatically receive the decision until the age of 18, without annual commission procedures or bureaucratic obstacles.

What we achieved

• An analysis of the situation of children with Down syndrome in Slovenia was prepared, for the first time systematically compiling available data and clearly highlighting the lack of official national statistics.
• At least a 10% increase in awareness of Down syndrome was achieved, as confirmed by a comparative “before–after” survey.
• The issue of the rights of children with Down syndrome was covered in at least 19 media publications at national and regional level, and further supported by 22 original posts on social media.
• More than 10 new collaborations were established between parents, organisations, and institutions, including through 6 regional consultations and 6 working group meetings.
• More than 100 families were directly supported through counselling, information, or assistance in exercising their rights.
• A proposal to amend the relevant regulation was prepared and submitted to the Ministry of Labour, Family, Social Affairs and Equal Opportunities, entering the inter-ministerial consultation process.
• A concrete administrative shift in practice was achieved, as during the campaign decisions granting the care allowance began to be extended to three years, and rejections have reportedly ceased.
• The project triggered responses at the highest political level, including a public statement by the Prime Minister of the Republic of Slovenia and consideration of the initiative on the predlagam.vladi.si government portal.

Contribution to Impact4Values programme indicators

• Number of publications issued: 10
• Number of awareness-raising campaigns: 1
• Number of participants in project activities: 218
• Number of individuals who used your services (e.g. counselling, legal advice, training): 10

The project DS Is Not a Disease, but It Is for Life brings together Zavod ZON.si, the Sožitje Hrastnik Association, and the Croatian Down Syndrome Association to exchange good practices and strengthen support for families of children with Down syndrome. Through the exchange of experiences, the project opens space for fairer solutions, improvements to legislation, and greater inclusion of children and young people with Down syndrome.

Within the project, the partners carried out several working meetings, compared legislation and support systems, and prepared a plan for transferring successful Croatian practices to the Slovenian context.

The central event of the project was a two-day international pilot event – International Saturday – which connected two Slovenian and two Croatian families. Through workshops, group activities, a round table, and the exchange of personal experiences, the partners developed guidelines for future cross-border meetings and strengthened connections among families. The project significantly enhanced the capacities of the participating organizations, increased media visibility of the topic, and laid the foundations for regular annual meetings that will, in the long term, contribute to better understanding and support for people with Down syndrome on both sides of the border.

Contribution to Impact4Values programme indicators

• Number of publications issued: 1
• Number of awareness-raising campaigns: 1
• Number of participants in project activities: 26

The project brings together Zavod ZON.si and the Croatian SIDRO Association to strengthen advocacy for the rights of children with special needs and other vulnerable groups. During a three-day workshop in the Zasavje region, the organizations exchanged experiences, good practices, and concrete advocacy approaches that can influence legislation and public policies. Special emphasis was placed on developing effective media campaigns, efficient cooperation with journalists, and understanding the role of the media in influencing legislative change.

As part of the project, guidelines for implementing a media campaign were developed in both Slovenian and Croatian, a letter of intent on long-term cooperation between the two organizations was signed, and a foundation was established for further cross-border projects focused on advocacy and support for the most vulnerable groups.

Contribution to Impact4Values programme indicators

• Number of publications issued: 1
• Number of awareness-raising campaigns: 1
• Number of participants in project activities: 5
• Number of individuals who used your services (e.g. counselling, legal advice, training): 4