{"id":5208,"date":"2017-05-20T13:50:25","date_gmt":"2017-05-20T11:50:25","guid":{"rendered":"http:\/\/iea.rs\/?page_id=5208"},"modified":"2017-05-21T00:10:51","modified_gmt":"2017-05-20T22:10:51","slug":"natalija-jovanovic","status":"publish","type":"page","link":"https:\/\/iea.rs\/en\/natalija-jovanovic\/","title":{"rendered":"Natalija Jovanovi\u0107"},"content":{"rendered":"<p>&nbsp;<\/p>\n<div id=\"attachment_4414\" style=\"width: 160px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-4414\" class=\"wp-image-4414 size-thumbnail\" src=\"http:\/\/iea.rs\/wp-content\/uploads\/2015\/04\/Natalija-Jovanovi\u0107-150x150.jpg\" alt=\"\" width=\"150\" height=\"150\" srcset=\"https:\/\/iea.rs\/wp-content\/uploads\/2015\/04\/Natalija-Jovanovi\u0107-150x150.jpg 150w, https:\/\/iea.rs\/wp-content\/uploads\/2015\/04\/Natalija-Jovanovi\u0107-50x50.jpg 50w, https:\/\/iea.rs\/wp-content\/uploads\/2015\/04\/Natalija-Jovanovi\u0107-240x240.jpg 240w, https:\/\/iea.rs\/wp-content\/uploads\/2015\/04\/Natalija-Jovanovi\u0107-100x100.jpg 100w\" sizes=\"auto, (max-width: 150px) 100vw, 150px\" \/><\/p>\n<p id=\"caption-attachment-4414\" class=\"wp-caption-text\">Natalija Jovanovi\u0107<\/p>\n<\/div>\n<p>[tabgarb]<\/p>\n<p>tab1=Essay=active<br \/>\ntab2=Media Activity<br \/>\ntab3=Peer to Peer Education<br \/>\n[\/tabgarb]<\/p>\n<p>[tabgarb=tab1]<\/p>\n<p><iframe loading=\"lazy\" title=\"Natalija Jovanovi\u0107 i Jelena Videnovi\u0107 - Belle amie jutro\" width=\"423\" height=\"238\" src=\"https:\/\/www.youtube.com\/embed\/7RdmTZfWTf4?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<p>[\/tabgarb]<\/p>\n<p>[tabgarb=tab2]<\/p>\n<h2 align=\"center\"><span lang=\"sr-Latn-ME\">Plan prakti\u010dne politike<\/span><\/h2>\n<p><span style=\"font-size: medium;\"><span lang=\"sr-Latn-ME\"> Kao jedna od najugro\u017eenijih manjinskih grupa kod nas javljaju se osobe sa invaliditetom. U poslednjoj deceniji na\u0161a dr\u017eava je radila na pobolj\u0161anju polo\u017eaja osoba sa invaliditetom i ostvaren je odre\u0111eni napredak.<br \/>\nSvakodnevni \u017eivot osoba sa invaliditetom je regulisan zakonom. Osobe koje boluju od bolesti koje se \u010de\u0161\u0107e javljaju na ovim podru\u010djima vidljive su makar u zakonskim propisima. Primena tih zakona u praksi je vrlo diskutabilna. Ali samim tim \u0161to se po\u010delo javno govoriti i raditi na re\u0161avanju njihovih problema, napredak se o\u010dekuje.<\/p>\n<p>Kao problem koji ja trenutno smatram goru\u0107im javlja se problem osoba koje boluju od retkih bolesti. Osobe koje boluju od bolesti koje nisu dovoljno poznate i slobodno mogu re\u0107i \u010deste, vrlo \u010desto nisu prepoznate u dru\u0161tvu. Grupa za koju smatram da joj je potrebno posvetiti dodatnu pa\u017enju jesu deca koja boluju od retkih bolesti, ali isto tako i njihovi roditelji koji odlu\u010duju da brinu o svojoj deci.<br \/>\nU na\u0161oj dr\u017eavi svako dete ima pravo na besplatnu zdravstvenu za\u0161titu. De\u0161ava se da deca obolevaju od bolesti koje zakonom nisu prepoznate. Te bolesti definitivno postoje i de\u0161avaju se, na\u0161oj deci, ali se u zvani\u010dnim propisima ne pominju. Postoje bolesti koje nisu evidentirane u na\u0161im propisima, nemaju svoju \u0161ifru, samim tim lekari nemaju pravo na izdavanje lekova koji \u0107e pomo\u0107i u le\u010denju ovih bolesti.<\/span><\/span><\/p>\n<p><span style=\"font-size: medium;\"><span lang=\"sr-Latn-ME\"> Tako\u0111e, smatram da su porodice dece obolele od retkih bolesti izuzetno ugro\u017eene. Ove porodice su izme\u0111u ostalog finansijski ugro\u017eene. Le\u010denje i nega dece iziskuje mnogo finansijskih tro\u0161kova koje dr\u017eava vrlo \u010desto ne pokriva. Ono \u0161to jeste veliki problem je briga i vreme koje je potrebno posvetiti ovoj deci. Roditelji koji odlu\u010de da sami brinu o svojoj deci automatski se moraju odre\u0107i svojih svakodnevnih aktivnosti, samim tim i poslova koji im donese zaradu. Odricanjem od zarade automatski ugor\u017eavaju mogu\u0107nost za privaljanjem finasijskih sredstava koja \u0107e njihovoj deci obezbediti bolji \u017eivot.<br \/>\n<\/span><\/span><\/p>\n<p><span style=\"font-size: medium;\"><span lang=\"sr-Latn-ME\"> Smatram, da bi pre svega deca obolela od retkih bolesti trebalo da budu prepoznata propisima. Najve\u0107i nedostatak predstavlja odgovaraju\u0107a klasifikacija i \u0161ifriranje mnogih retkih bolesti koji u zdravstvenom sistemu ostaju neprepoznate. Vlada Republike Srbije je 2014. donela <\/span><\/span><span style=\"font-size: medium;\">Zakon o zdravstvenoj dokumentaciji I evidencijama u oblasti zdravstva, koji propisuje obavezu vo\u0111enja registara za 17 grupa bolesti i stanja od ve\u0107eg javno-zdravstvenog zna\u010daja (\u010dlan 31), u \u010dijoj grupi je i registar za retke bolesti. <\/span><span style=\"font-size: medium;\">Registar se sastoji od niza dijagnostikovanih, novootkrivenih slu\u010dajeva obolelih od retkih bolesti, u jasno definisanoj populaciji i vremenu. Registracija podrazumeva neposredne aktivnosti, sa ciljem da pru\u017ei uvid u broj obolelih od retkih bolesti. To je proces kontinuiranog, sistematskog prikupljanja, \u010duvanja, analiziranja i interpretacije podataka o osobama obolelim od retkih bolesti. Do sada nije prime\u0107en napredak u ovoj oblasti ali se o\u010dekuje u budu\u0107em period s obzirom da \u0107e se Zakon primenjivati od januara 2016. godine. <\/span><\/p>\n<p><span style=\"font-size: medium;\"><span lang=\"sr-Latn-ME\">Dalje, predlog za re\u0161avanje problema roditelja koji brinu o svojoj oboleloj deci jeste da njihov status bude regulisan zakonom. Zakonom o finansijskoj podr\u0161ci porodici s decom regulisan je polo\u017eaj kako polo\u017eaj roditelja, tako i polo\u017eaj hranitelja. Smatram da bi polo\u017eaj roditelja dece obolele od te\u0161kih bolesti tako\u0111e mogao da bude regulisan ovim zakonom. \u010clan 1 Zakona o finansijskoj podrsci roditelja s decom kazuje: (<\/span><\/span><span style=\"font-size: medium;\">Finansijska podr\u0161ka porodici sa decom, u smislu ovog zakona, obuhvata:<\/span><\/p>\n<p><span style=\"font-size: medium;\">1) pobolj\u0161anje uslova za zadovoljavanje osnovnih potreba dece;<\/span><\/p>\n<p><span style=\"font-size: medium;\">2) poseban podsticaj ra\u0111anju dece;<\/span><\/p>\n<p><span style=\"font-size: medium;\">3) podr\u0161ku materijalno ugro\u017eenim porodicama sa decom, porodicama sa decom sa smetnjama u razvoju i deci bez roditeljskog staranja). Mislim da bi ovaj Zakon tako\u0111e trebalo da u \u010dlanu 1, obuhvati I podr\u0161ku roditeljima sa decom obolelom od retkih bolesti koje ne spadaju u kategoriju smetnji u razvoju. Na taj na\u010din bi sve odredbe zakona va\u017eile I za ove porodice I njihovom polo\u017eaj bi u velikoj meri bio promenjen. Npr.\u010dlan 20 (Za samohrane roditelje, hranitelje, staratelje i roditelje deteta sa smetnjama u razvoju za koje je donet akt o razvrstavanju a koje nije sme\u0161teno u stacionarnu ustanovu, cenzus utvr\u0111en u \u010dlanu 19. ovog zakona uve\u0107ava se za 20%.), kojim se odre\u0111uje visina de\u010dijeg dodatka, dodavanjem porodica sa decom obolelom od retkih bolesti u kategoriju koja je obuhva\u0107ena ovim zakonom polo\u017eaj ovih porodica bi se promeni.<br \/>\nIsto to va\u017ei I za ostale \u010dlanove zakona \u010dija bi primena mogla da se pro\u0161iri I na ove porodice.<\/span><\/p>\n<p><span style=\"font-size: medium;\"><span lang=\"sr-Latn-ME\">Tako\u0111e, je Pravilnikom o hraniteljstvu regulisan polo\u017eaj hranitelja. Smatram da bi status roditelja dece koja boluju od te\u0161kih bolesti, mogao da bude regulisan na sli\u010dan kao i polo\u017eaj hranitelja.Ovim zakonom regulisana je podr\u0161ka detetu i hraniteljskoj porodici. \u010clan 41 ovog zakona predstavlja vidove podr\u0161ke koji se pru\u017eaju. Smatram da bi na sli\u010dan na\u010din mogla bti regulisana i podr\u0161ka porodicama sa decom obolelom od retkih bolesti. Pre svega mislim na deo u kome se govori o materijalnoj podr\u0161ci. Tako\u0111e, materijalna podr\u0161ka mo\u017ee biti regulisana i Zakonom o radu kojim je ve\u0107 delimi\u010dno regulisan polo\u017eaj roditelja \u010dija deca \u017eice sa invaliditetom. Ali bi trebalo detaljnije regulisati ove odredbe. <\/span><\/span><\/p>\n<p><span style=\"font-size: medium;\"><span lang=\"sr-Latn-ME\"><br \/>\nPolo\u017eaj osoba sa invaliditetom je jedna jako kompleksna tema, koju je te\u0161ko obuhvatiti u ovih par re\u010denica. Ali se nadam da sam uspela da uka\u017eem na postojanje jo\u0161 jednog problema ugro\u017eenih grupa u na\u0161em dru\u0161tvu. A verujem, da \u010dak i ukoliko predlog za re\u0161avanje nije najadekvatniji, da \u0107e se do\u0107i do boljeg re\u0161enja ukoliko se krene sa radom. Prvi korak ka re\u0161avanju problema, jeste prepoznavanje problema.<\/span><\/span><\/p>\n<p>&nbsp;<\/p>\n<p>[\/tabgarb]<\/p>\n<p>[tabgarb=tab3]<\/p>\n<p><a href=\"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-5440\" src=\"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-150x150.jpg\" alt=\"\" width=\"150\" height=\"150\" srcset=\"https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-150x150.jpg 150w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-50x50.jpg 50w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-240x240.jpg 240w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-100x100.jpg 100w\" sizes=\"auto, (max-width: 150px) 100vw, 150px\" \/><\/a> <a href=\"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_16_42_Pro-2.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-5441\" src=\"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_16_42_Pro-2-150x150.jpg\" alt=\"\" width=\"150\" height=\"150\" srcset=\"https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_16_42_Pro-2-150x150.jpg 150w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_16_42_Pro-2-50x50.jpg 50w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_16_42_Pro-2-240x240.jpg 240w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_16_42_Pro-2-100x100.jpg 100w\" sizes=\"auto, (max-width: 150px) 100vw, 150px\" \/><\/a> <a href=\"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_44_55_Pro-2.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-thumbnail wp-image-5442\" src=\"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_44_55_Pro-2-150x150.jpg\" alt=\"\" width=\"150\" height=\"150\" srcset=\"https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_44_55_Pro-2-150x150.jpg 150w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_44_55_Pro-2-50x50.jpg 50w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_44_55_Pro-2-240x240.jpg 240w, https:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/WP_20151104_12_44_55_Pro-2-100x100.jpg 100w\" sizes=\"auto, (max-width: 150px) 100vw, 150px\" \/><\/a><\/p>\n<p>[\/tabgarb]<\/p>","protected":false},"excerpt":{"rendered":"<p>&nbsp; [tabgarb] tab1=Essay=active tab2=Media Activity tab3=Peer to Peer Education [\/tabgarb] [tabgarb=tab1] &nbsp; [\/tabgarb] [tabgarb=tab2] Plan prakti\u010dne politike Kao jedna od najugro\u017eenijih manjinskih grupa kod nas &hellip; <a class=\"more-btn\" href=\"https:\/\/iea.rs\/en\/natalija-jovanovic\/\">Read more &raquo;<\/a><\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"fullwidth.php","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-5208","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Natalija Jovanovi\u0107 - Institute for European Affairs<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/iea.rs\/en\/natalija-jovanovic\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Natalija Jovanovi\u0107 - Institute for European Affairs\" \/>\n<meta property=\"og:description\" content=\"&nbsp; 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[tabgarb] tab1=Essay=active tab2=Media Activity tab3=Peer to Peer Education [\/tabgarb] [tabgarb=tab1] &nbsp; [\/tabgarb] [tabgarb=tab2] Plan prakti\u010dne politike Kao jedna od najugro\u017eenijih manjinskih grupa kod nas &hellip; Read more &raquo;","og_url":"https:\/\/iea.rs\/en\/natalija-jovanovic\/","og_site_name":"Institute for European Affairs","article_modified_time":"2017-05-20T22:10:51+00:00","og_image":[{"url":"http:\/\/iea.rs\/wp-content\/uploads\/2015\/04\/Natalija-Jovanovi\u0107-150x150.jpg","type":"","width":"","height":""}],"twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"10 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/iea.rs\/en\/natalija-jovanovic\/","url":"https:\/\/iea.rs\/en\/natalija-jovanovic\/","name":"Natalija Jovanovi\u0107 - Institute for European Affairs","isPartOf":{"@id":"https:\/\/iea.rs\/#website"},"primaryImageOfPage":{"@id":"https:\/\/iea.rs\/en\/natalija-jovanovic\/#primaryimage"},"image":{"@id":"https:\/\/iea.rs\/en\/natalija-jovanovic\/#primaryimage"},"thumbnailUrl":"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-150x150.jpg","datePublished":"2017-05-20T11:50:25+00:00","dateModified":"2017-05-20T22:10:51+00:00","breadcrumb":{"@id":"https:\/\/iea.rs\/en\/natalija-jovanovic\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/iea.rs\/en\/natalija-jovanovic\/"]}]},{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/iea.rs\/en\/natalija-jovanovic\/#primaryimage","url":"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-150x150.jpg","contentUrl":"http:\/\/iea.rs\/wp-content\/uploads\/2017\/05\/12272695_920350988019897_1102561100_n-2-150x150.jpg"},{"@type":"BreadcrumbList","@id":"https:\/\/iea.rs\/en\/natalija-jovanovic\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"\u041f\u043e\u0447\u0435\u0442\u043d\u0430","item":"https:\/\/iea.rs\/"},{"@type":"ListItem","position":2,"name":"Natalija Jovanovi\u0107"}]},{"@type":"WebSite","@id":"https:\/\/iea.rs\/#website","url":"https:\/\/iea.rs\/","name":"Institute for European Affairs","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/iea.rs\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"}]}},"_links":{"self":[{"href":"https:\/\/iea.rs\/en\/wp-json\/wp\/v2\/pages\/5208","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/iea.rs\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/iea.rs\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/iea.rs\/en\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/iea.rs\/en\/wp-json\/wp\/v2\/comments?post=5208"}],"version-history":[{"count":0,"href":"https:\/\/iea.rs\/en\/wp-json\/wp\/v2\/pages\/5208\/revisions"}],"wp:attachment":[{"href":"https:\/\/iea.rs\/en\/wp-json\/wp\/v2\/media?parent=5208"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}