{"id":12834,"date":"2022-10-03T14:01:40","date_gmt":"2022-10-03T11:01:40","guid":{"rendered":"https:\/\/citil.av.tr\/?p=12834"},"modified":"2022-10-03T16:35:02","modified_gmt":"2022-10-03T13:35:02","slug":"smali-cocuklar-ozelinde-ulusal-ve-uluslararasi-cocuk-haklari","status":"publish","type":"post","link":"https:\/\/citil.av.tr\/en\/smali-cocuklar-ozelinde-ulusal-ve-uluslararasi-cocuk-haklari\/","title":{"rendered":"SMA&#8217;l\u0131 \u00c7ocuklar \u00d6zelinde Ulusal Ve Uluslararas\u0131 \u00c7ocuk Haklar\u0131"},"content":{"rendered":"<div class=\"row\"><div class=\"wpv-grid grid-1-1  wpv-first-level first unextended\" style=\"padding-top:0px;padding-bottom:0px\" id=\"wpv-column-07e689bdae3da608ce6589f4f94a4955\" ><p>SMA, a\u00e7\u0131l\u0131m\u0131 ile Spinal Musk\u00fcler Atrofi, \u00e7ok b\u00fcy\u00fck \u00e7o\u011funlukla \u00e7ocuklarda g\u00f6r\u00fclen bir \u00e7e\u015fit gen bozuklu\u011fu hastal\u0131\u011f\u0131d\u0131r. \u00c7o\u011funlukla \u00e7ocuklarda rastlanan bu hastal\u0131k d\u00fcnya genelindeki ortak bir sorundur. Genel olarak 4 tipte, \u00e7ocuklar \u00fczerinde ise 3 tip \u015feklinde g\u00f6r\u00fclen SMA\u2019da \u00f6l\u00fcm riski olduk\u00e7a b\u00fcy\u00fck olsa da erken te\u015fhis ve h\u0131zl\u0131 tedavi ile iyile\u015fme olas\u0131l\u0131\u011f\u0131 b\u00fcy\u00fck oranda artmaktad\u0131r. G\u00f6r\u00fclme olas\u0131l\u0131\u011f\u0131 d\u00fcnyada 1\/10000, \u00fclkemizde ise 1\/6000\u2019dir. Verilere g\u00f6re \u00e7ok s\u0131k rastlanan bir hastal\u0131k olmamas\u0131n\u0131n yan\u0131 s\u0131ra tedavi ve ila\u00e7 masraflar\u0131n\u0131n \u00e7ok pahal\u0131 olmas\u0131ndan dolay\u0131 ailelerin ve \u00e7e\u015fitli fonlar\u0131n y\u00fcr\u00fctt\u00fc\u011f\u00fc ba\u011f\u0131\u015f kampanyalar\u0131 ile ad\u0131na s\u0131kl\u0131kla rastlar olduk. Peki tedavisi olduk\u00e7a maliyetli olan bu hastal\u0131k i\u00e7in devlet deste\u011fi var m\u0131, verilen destek yeterli mi, bu hukuka uygun mu? \u00c7ocuklar\u0131m\u0131z\u0131n Ulusal ve Uluslararas\u0131 haklar\u0131 neler, gelin birlikte inceleyelim.<\/p>\n<p>SMA\u2019l\u0131 \u00e7ocuklar\u0131n ila\u00e7 tedavi masraflar\u0131n\u0131n SGK taraf\u0131ndan kar\u015f\u0131lanmas\u0131 yasal olarak ilk defa 5 Temmuz 2017 tarihinde yaln\u0131zca Tip-1 hastas\u0131 olan \u00e7ocuklar i\u00e7in, 1 \u015eubat 2019 tarihinde ise Tip-2 ve Tip-3 hastas\u0131 olan \u00e7ocuklar i\u00e7in Resmi Gazete\u2019de yay\u0131mlanan tebli\u011fler ile y\u00fcr\u00fcrl\u00fc\u011fe girmi\u015ftir. Ancak ne yaz\u0131k ki sorgusuz sualsiz her SMA hastas\u0131 \u00e7ocu\u011fun tedavi masraflar\u0131 kar\u015f\u0131lanmam\u0131\u015f, mevzuatta masraflar\u0131n kar\u015f\u0131lanmas\u0131 i\u00e7in birtak\u0131m \u015fartlar aranm\u0131\u015ft\u0131r. \u00d6rne\u011fin Tip-1 hastas\u0131 \u00e7ocuklar i\u00e7in mevzuatta bu \u015fart aranmazken Tip-2 ve Tip-3 hastas\u0131 \u00e7ocuklar i\u00e7in solunum cihaz\u0131na ba\u011fl\u0131 olmama \u015fart\u0131 aranm\u0131\u015ft\u0131r. Bunun d\u0131\u015f\u0131nda bir di\u011fer f\u0131krada ise tedavisi SGK taraf\u0131ndan kar\u015f\u0131lanan \u00e7ocuk, 15 ay\u0131n sonunda \u015fayet tedaviye olumlu anlamda (HFMSE\/MFM skoruna g\u00f6re en az 3 puan) cevap vermediyse ya da ba\u015flang\u0131\u00e7ta tedavisinin kar\u015f\u0131lanmas\u0131 i\u00e7in \u015fart ko\u015fulan kriterlerden herhangi birisine art\u0131k uymuyorsa tedavi s\u00fcrecinin son bulaca\u011f\u0131 yaz\u0131yor. Bu da asl\u0131nda alenen \u00e7ocu\u011fu kaderine terk etmekten ba\u015fka bir \u015fey de\u011fil. Zira taraf\u0131 oldu\u011fumuz Ekonomik, Sosyal ve K\u00fclt\u00fcrel Haklara \u0130li\u015fkin Uluslararas\u0131 S\u00f6zle\u015fmeye g\u00f6re taraf devletlerin; hastal\u0131k durumunda herkese t\u0131bbi hizmet ve bak\u0131m sa\u011flama ko\u015fullar\u0131n\u0131n yarat\u0131lmas\u0131, \u00e7ocuk \u00f6l\u00fcm oranlar\u0131n\u0131n d\u00fc\u015f\u00fcr\u00fclmesi ve \u00e7ocuklar\u0131n sa\u011fl\u0131kl\u0131 bir \u015fekilde geli\u015fiminin sa\u011flanmas\u0131, hastal\u0131klar\u0131n tedavisi, \u00f6nlenmesi ve kontrol\u00fcn\u00fcn sa\u011flanmas\u0131 gibi gibi y\u00fck\u00fcml\u00fcl\u00fckleri var.<\/p>\n<p>Yine taraf\u0131 oldu\u011fumuz \u00c7ocuk Haklar\u0131na Dair S\u00f6zle\u015fme\u2019de de konumuzla ilgili maddeler bulmak m\u00fcmk\u00fcn.<\/p>\n<p>Madde 6: \u2018\u2019Taraf Devletler, her \u00e7ocu\u011fun temel ya\u015fama hakk\u0131na sahip oldu\u011funu kabul ederler.\u2019\u2019<\/p>\n<p>\u2018\u2019&#8230;\u00c7ocu\u011fun hayatta kalmas\u0131 ve geli\u015fmesi i\u00e7in m\u00fcmk\u00fcn olan azami \u00e7abay\u0131 g\u00f6sterirler.\u2019\u2019<\/p>\n<p>Madde 24: \u2018\u2019&#8230;\u00c7ocu\u011fun olabilecek en iyi sa\u011fl\u0131k d\u00fczeyine kavu\u015fma, t\u0131bbi bak\u0131m ve rehabilitasyon hizmetlerini veren kurulu\u015flardan yararlanma hakk\u0131n\u0131 tan\u0131rlar. Hi\u00e7bir \u00e7ocu\u011fun bu t\u00fcr t\u0131bbi bak\u0131m hizmetlerinden yaralanma hakk\u0131ndan yoksun b\u0131rak\u0131lmamas\u0131n\u0131 g\u00fcvence alt\u0131na almak i\u00e7in \u00e7aba g\u00f6sterirler.\u2019\u2019<\/p>\n<p>\u2018\u2019Bebek ve \u00e7ocuk \u00f6l\u00fcm oranlar\u0131n\u0131n d\u00fc\u015f\u00fcr\u00fclmesi, b\u00fct\u00fcn \u00e7ocuklara gerekli t\u0131bbi yard\u0131m\u0131n ve t\u0131bbi bak\u0131m\u0131n; temel sa\u011fl\u0131k hizmetlerinin geli\u015ftirilmesine \u00f6nem verilerek sa\u011flanmas\u0131, \u2026, ama\u00e7lar\u0131yla uygun \u00f6nlemleri al\u0131rlar.\u2019\u2019<\/p>\n<p>Taraf\u0131 oldu\u011fumuz Uluslararas\u0131 S\u00f6zle\u015fmelerde de g\u00f6rd\u00fc\u011f\u00fcm\u00fcz \u00fczere mevzuatlar \u00e7ocuklar\u0131n ya\u015fama hakk\u0131n\u0131n, sa\u011fl\u0131k durumlar\u0131n\u0131n, ald\u0131klar\u0131 t\u0131bbi bak\u0131m ve tedavilerin s\u00f6zle\u015fmeye taraf devletlerin sorumlulu\u011funda oldu\u011funu ve devletlerce kar\u015f\u0131lanmas\u0131 gerekti\u011fini yer yer vurgulam\u0131\u015ft\u0131r.<span class=\"Apple-converted-space\">\u00a0<\/span><\/p>\n<p>Normlar hiyerar\u015finin en \u00fcst basama\u011f\u0131nda yer alan mevzuat\u0131m\u0131z Anayasa kapsam\u0131nda da konumuzu Ulusal a\u00e7\u0131dan de\u011ferlendirelim.<\/p>\n<p>Madde 17: \u2018\u2019Herkes, ya\u015fama, maddi ve manevi varl\u0131\u011f\u0131n\u0131 koruma ve geli\u015ftirme hakk\u0131na sahiptir\u2019\u2019<\/p>\n<p>Madde 56: \u2018\u2019Herkes sa\u011fl\u0131kl\u0131 ve dengeli bir \u00e7evrede ya\u015fama hakk\u0131na sahiptir.\u2019\u2019 ve devam\u0131nda insanlar\u0131n hayatlar\u0131n\u0131 sa\u011fl\u0131kl\u0131 bir \u015fekilde s\u00fcrd\u00fcrebilmeleri i\u00e7in devletin yapmas\u0131 gereken denetimlerden bahseder.<span class=\"Apple-converted-space\">\u00a0<\/span><\/p>\n<p>Madde 65: \u2018\u2019Devlet, sosyal ve ekonomik alanlarda Anayasa ile belirlenen g\u00f6revlerini, bu g\u00f6revlerin ama\u00e7lar\u0131na uygun \u00f6ncelikleri g\u00f6zeterek mali kaynaklar\u0131n\u0131n yeterlili\u011fi \u00f6l\u00e7\u00fcs\u00fcnde yerine getirir.\u2019\u2019<\/p>\n<p>Hem Ulusal hem Uluslararas\u0131 mevzuatlar\u0131m\u0131zda da a\u00e7\u0131k\u00e7a g\u00f6rd\u00fc\u011f\u00fcm\u00fcz gibi, hukuk sistemi, devletin b\u00fct\u00fcn mevcudiyetiyle \u00e7ocuklar\u0131n her t\u00fcrl\u00fc \u00fcst\u00fcn yarar\u0131n\u0131 g\u00f6zetmesini ama\u00e7lam\u0131\u015ft\u0131r. \u0130lgili mevzuat maddeleri \u0131\u015f\u0131\u011f\u0131nda SMA\u2019l\u0131 \u00e7ocuklar\u0131n tedavi giderlerinin, ula\u015f\u0131lmas\u0131 \u00e7ok g\u00fc\u00e7 olan ila\u00e7lar\u0131n\u0131n temininin en ba\u015f\u0131ndan beri devletin tekelinde olmas\u0131 gerekti\u011fi a\u015fikard\u0131r. Ancak buna ra\u011fmen ilgili d\u00fczenlemenin 2017 y\u0131l\u0131nda yaln\u0131zca Tip-1 hastas\u0131 \u00e7ocuklar i\u00e7in gelmesi, 2019 y\u0131l\u0131nda a\u00e7\u0131\u011f\u0131 kapatmaya \u00e7al\u0131\u015farak i\u015fin i\u00e7ine Tip-2 ve Tip-3 hastas\u0131 \u00e7ocuklar\u0131n da dahil edilmesi ancak bu kez de belli ba\u015fl\u0131 ko\u015fullarla, \u00f6zellikle 15 ay\u0131n sonunda ilerleme kaydedemeyen \u00e7ocu\u011fun tedavisini sonland\u0131rarak \u00e7ocu\u011fu g\u00f6zden \u00e7\u0131karmak gibi d\u00fczenlemeler ne yaz\u0131k ki ne iyi niyetlidir ne de ulusal ve uluslararas\u0131 mevzuatlar\u0131m\u0131za uygun niteliktedir. \u00c7ocuklar\u0131m\u0131z\u0131n gelece\u011fimiz oldu\u011funu unutmadan, hi\u00e7bir \u00e7ocu\u011fumuzu yabana atmadan, g\u00f6zden \u00e7\u0131karmadan; haklar\u0131 olan bu ya\u015fam i\u00e7in, var olabilmeleri, filizlenebilmeleri, \u00e7i\u00e7ek a\u00e7malar\u0131 i\u00e7in elvermek, sa\u011fl\u0131klar\u0131na ve biricik ailelerine kavu\u015fmalar\u0131 i\u00e7in toplum olarak m\u00fccadele etmek bizim vazifemiz. Unutulmamal\u0131d\u0131r ki, 2017\u2019deki d\u00fczenleme de 2019\u2019daki d\u00fczenleme de sessiz kalmayan, \u00e7ocuklar\u0131m\u0131z i\u00e7in ses olan vatanda\u015flar\u0131n, Sivil Toplum Kurulu\u015flar\u0131n\u0131n eseridir. Her zaman i\u00e7in her ko\u015fulda daha iyisi m\u00fcmk\u00fcn. Ulusal ve Uluslararas\u0131 mevzuatlar\u0131m\u0131za uyarak her \u00e7ocu\u011fumuzun e\u015fit haklarla tedavi g\u00f6rebilmesi, ila\u00e7lar\u0131n\u0131n kolayca temini ve masraflar\u0131n\u0131n ko\u015fulsuz \u015farts\u0131z devlet taraf\u0131ndan kar\u015f\u0131lanmas\u0131 i\u00e7in t\u00fcm okurlar\u0131 m\u00fccadeleye davet ediyorum. Hukuk sistemi hi\u00e7bir suretle mevcut hakk\u0131n kullan\u0131lamamas\u0131 y\u00fcz\u00fcnden \u00e7ocuklar\u0131n hayattan kopar\u0131ld\u0131\u011f\u0131 bir d\u00fc\u015f\u00fcnceyi savunmaz. Ve adalet eninde sonunda tecelli eder.<\/p>\n<p>B\u00fcnyesinde blog yazar\u0131 olarak bulunmaktan mutluluk duydu\u011fum \u00c7itil Avukatl\u0131k Ortakl\u0131\u011f\u0131\u2019na sa\u011flam\u0131\u015f olduklar\u0131 imkan i\u00e7in te\u015fekk\u00fcr ederim. Her ko\u015fulda hukukun \u00fcst\u00fcnl\u00fc\u011f\u00fcn\u00fc konu\u015ftu\u011fumuz di\u011fer bloglar\u0131m\u0131zdan haberdar olmak i\u00e7in \u00c7itil Haber B\u00fclteni\u2019ne abone olabilirsiniz.<\/p>\n<p><em><strong>Merve Alt\u0131parmak<\/strong><\/em><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>SMA, a\u00e7\u0131l\u0131m\u0131 ile Spinal Musk\u00fcler Atrofi, \u00e7ok b\u00fcy\u00fck \u00e7o\u011funlukla \u00e7ocuklarda g\u00f6r\u00fclen bir \u00e7e\u015fit gen bozuklu\u011fu hastal\u0131\u011f\u0131d\u0131r. \u00c7o\u011funlukla \u00e7ocuklarda rastlanan bu hastal\u0131k d\u00fcnya genelindeki ortak bir sorundur. Genel olarak 4 tipte, \u00e7ocuklar \u00fczerinde ise 3 tip \u015feklinde g\u00f6r\u00fclen SMA\u2019da \u00f6l\u00fcm riski olduk\u00e7a b\u00fcy\u00fck olsa da erken te\u015fhis ve h\u0131zl\u0131 tedavi ile iyile\u015fme olas\u0131l\u0131\u011f\u0131 b\u00fcy\u00fck oranda artmaktad\u0131r&#8230;.<\/p>","protected":false},"author":1,"featured_media":12835,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[95],"tags":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v21.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>SMA&#039;l\u0131 \u00c7ocuklar \u00d6zelinde Ulusal Ve Uluslararas\u0131 \u00c7ocuk Haklar\u0131 - \u00c7itil Avukatl\u0131k Ortakl\u0131\u011f\u0131<\/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:\/\/citil.av.tr\/en\/smali-cocuklar-ozelinde-ulusal-ve-uluslararasi-cocuk-haklari\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"SMA&#039;l\u0131 \u00c7ocuklar \u00d6zelinde Ulusal Ve Uluslararas\u0131 \u00c7ocuk Haklar\u0131 - \u00c7itil Avukatl\u0131k Ortakl\u0131\u011f\u0131\" \/>\n<meta property=\"og:description\" content=\"SMA, a\u00e7\u0131l\u0131m\u0131 ile Spinal Musk\u00fcler Atrofi, \u00e7ok b\u00fcy\u00fck \u00e7o\u011funlukla \u00e7ocuklarda g\u00f6r\u00fclen bir \u00e7e\u015fit gen bozuklu\u011fu hastal\u0131\u011f\u0131d\u0131r. \u00c7o\u011funlukla \u00e7ocuklarda rastlanan bu hastal\u0131k d\u00fcnya genelindeki ortak bir sorundur. 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