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

V Sloveniji otroci z Downovim sindromom odločbe, ki jih zakonodajno uvršča med otroke s posebnimi potrebami (ta dokument je do polnoletnosti edini uradni dokument, ki jih »loči« od povprečnih otrok), ne dobijo avtomatsko. Komisija vsako leto odloča o tem, ali je njihova oblika motnje »dovolj zahtevna« in se povsem subjektivno odloča, ali ti otroci spadajo med osebe s posebnimi potrebami ali ne. Starši pa so vsako leto znova soočeni s papirološko vojno, stresnim oddajanjem in čakanjem na rezultat. Povsem nepotrebno, saj komisije za takšna odločanja na leto prejmejo skoraj pol milijona evrov, za posameznega otroka in družino pa bi ta denar pomenil dobrih 100 evrov mesečno in veliko manj težav. S projektom želi Zavod ZON.si spremeniti zakonodajo, natančneje Seznam kroničnih bolezni in stanj, na način, da bi vsi otroci z DS do 18. leta odločbo prejeli avtomatsko. Brez vsakoletnega odločanja komisije, birokratskih zapletov itd.

Osrednja ciljna skupina, ki bo neposredno občutila učinek uspešnega projekta, so družine in otroci z Downovim sindromom. Druga ciljna skupina pa je splošna javnost, saj želijo, da se širša publika seznani z (ne)pravicami na področju ranljivih skupin.

Kaj bodo dosegli:

• V projektu bodo naredili analizo stanja otrok in oseb z DS v Sloveniji. To področje je namreč izredno slabo pokrito, podatki pa površni.
• Pripravili bodo vsaj 8 zgodb in jih ujeli na video, da bi predstavili življenja družin in otrok z DS ter pomen, ki ga ima nanje odločba za dodatek za nego. Zgodbe bodo med drugim delili v medijski ozaveščevalni kampanji, jih predstavili na plakatih, v sporočilih za javnost in na letakih. Organizirali bodo novinarsko konferenco in preverili, kako dobro splošna javnost to dotično temo pozna. Računajo, da bodo dosegli vsaj 300 družin in posameznikov.
• Poleg treh delovnih sestankov s partnerji, bodo organizirali 6 regijskih posvetov s starši otrok z DS. Povezali se bodo z odločevalci – CSD, predstavniki ministrstva, Centri za obravnavo otrok s PP, pediatri in drugimi relevantnimi sogovorniki ter skupaj postavili okvirje za boljše življenje oseb z DS. Da bi čimprej dosegli cilj, bo na projektu aktivno sodelovalo vsaj 10 oseb.
• Aktivnosti in cilj projekta bodo vplivali na vsaj en zakonski in 3 podzakonske akte. Posredno pa tudi na trenutno spreminjajočo zakonodajo s področja oseb s posebnimi potrebami.
• Učinek projekta naj bi že v prvem letu prinesel spremembo za vsaj 150 družin, v naslednjih 5 letih pa za več kot 500 družin.

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In Slovenia, children with Down syndrome do not automatically receive decisions that classify them as children with special needs (this document is the only official document that separates them from average children until they reach adulthood). Each year, a commission decides whether their form of disability is “sufficiently severe” and makes a completely subjective decision on whether these children fall under the category of people with special needs. Parents are faced every year with paperwork battles, stressful submissions, and waiting for results. This is entirely unnecessary, as commissions receive nearly half a million euros annually for such decisions. For each child and family, this money would mean around 100 euros per month and a lot less hassle. With the project, Zavod ZON.si aims to change the legislation, specifically the Chronic Diseases and Conditions List, so that all children with DS receive a decision automatically by age 18. Without the annual decision-making by the commission, bureaucratic complications, etc.

The central target group directly affected by the successful project will be families and children with Down syndrome. The second target group is the general public, as they wish to educate the broader audience about (non)rights in the area of vulnerable groups.

What will they achieve:

• In the project, they will make an analysis of the situation of children and individuals with DS in Slovenia. This area is extremely poorly covered, and the data is superficial.
• They will prepare at least 8 stories and capture them on video to present the lives of families and children with DS and the importance of the care supplement decision. These stories will be shared, among other things, in a media awareness campaign, on posters, in press releases, and on leaflets. They will organize a press conference and check how well the general public is familiar with this specific topic. They expect to reach at least 300 families and individuals.
• In addition to three working meetings with partners, they will organize 6 regional consultations with the parents of DS children. They will connect with decision-makers – CSD, ministry representatives, Centers for handling children with disabilities, pediatricians, and other relevant interlocutors and together set frameworks for better lives for individuals with DS. To achieve their goal as quickly as possible, at least 10 people will actively participate in the project.
• The project activities and objectives will influence at least one law and three secondary legislation acts. Indirectly, they will also affect the current legislation in the field of people with special needs.
• The project’s impact is expected to bring a change for at least 150 families in the first year, and in the next 5 years, for more than 500 families.