{"id":167136,"date":"2022-02-28T21:31:14","date_gmt":"2022-02-28T20:31:14","guid":{"rendered":"https:\/\/sdk.mk\/?p=167136"},"modified":"2022-02-28T21:31:14","modified_gmt":"2022-02-28T20:31:14","slug":"femijet-cdo-vit-duhet-te-vertetojne-se-jane-me-sindromen-daun-qe-t-i-ushtrojne-te-drejtat-e-tyre-nga-marsi-do-te-vihet-ne-zbatim-nje-klasifikim-i-ri","status":"publish","type":"post","link":"https:\/\/sdk.mk\/index.php\/histori-te-parrefyera\/femijet-cdo-vit-duhet-te-vertetojne-se-jane-me-sindromen-daun-qe-t-i-ushtrojne-te-drejtat-e-tyre-nga-marsi-do-te-vihet-ne-zbatim-nje-klasifikim-i-ri\/","title":{"rendered":"F\u00cbMIJ\u00cbT \u00c7DO VIT DUHET T\u00cb V\u00cbRTETOJN\u00cb SE JAN\u00cb ME SINDROM\u00cbN DAUN Q\u00cb T&#8217;I USHTROJN\u00cb T\u00cb DREJTAT E TYRE, NGA MARSI DO T\u00cb VIHET NE ZBATIM NJ\u00cb KLASIFIKIM I RI"},"content":{"rendered":"<div class=\"f52428582a4b906b2d2e2a7d733c7d27\" data-index=\"7\" style=\"float: none; margin:10px 0 10px 0; text-align:center;\">\n<!-- MSP Ads Asynchronous JS Tag - Generated with Revive Adserver v5.4.1 -->\r\n<ins data-revive-zoneid=\"167\" data-revive-id=\"060fdb01f6430ec164d3519234aa4967\"><\/ins>\r\n<script async src=\"\/\/panel.ads.com.mk\/www\/delivery\/asyncjs.php\"><\/script>\n<\/div>\n<p>Edhe pse Sindroma Daun \u00ebsht\u00eb nj\u00eb diagnoz\u00eb p\u00ebr t\u00ebr\u00eb jet\u00ebn, f\u00ebmij\u00ebt t\u00eb cil\u00ebt kan\u00eb \u00e7rregullim hormonal, \u00e7do vit, jan\u00eb t\u00eb detyruar q\u00eb t\u00eb marrin mendim nga Komisioni i Entit p\u00ebr sh\u00ebndetin mendor n\u00eb lidhje me nivelin e kufizimit n\u00eb zhvillim, n\u00eb qoft\u00eb se duan t&#8217;i ushtrojn\u00eb pa problem t\u00eb drejtat e tyre.\u00a0 Prind\u00ebrit thon\u00eb se pavar\u00ebsisht k\u00ebmb\u00ebnguljes s\u00eb tyre dhe tendencave globale n\u00eb aplikimin e klasifikimit funksional modern, q\u00eb nuk n\u00ebnkupton nj\u00eb shkall\u00eb paaft\u00ebsie, por identifikon potencialin p\u00ebr p\u00ebrmir\u00ebsim p\u00ebrmes pun\u00ebs, f\u00ebmij\u00ebt k\u00ebtu ende kategorizohen sipas nj\u00eb metode t\u00eb vjet\u00ebruar.<\/p>\n<p>\u201cFakti q\u00eb ata kan\u00eb Sindrom\u00ebn Doun nuk ndryshon, por pavar\u00ebsisht k\u00ebtij fakti, \u00e7do vit prind\u00ebrit duhet t\u00eb drejtohen tek Enti p\u00ebr t\u00eb marr\u00eb nj\u00eb mendim dhe konstatim rreth nivelit t\u00eb kufizimit n\u00eb zhvillim.\u00a0 Pse \u00e7do vit? Kromozomi nuk do t\u00eb zhduket. Mir\u00ebpo p\u00ebr t\u00eb k\u00ebrkuar shtes\u00ebn e ve\u00e7ant\u00eb, kjo procedur\u00eb \u00ebsht\u00eb e domosdoshme. Ata q\u00eb kan\u00eb pasur Sindrom\u00ebn Doun vitin e kaluar e kan\u00eb edhe sivjet.\u00a0 Nj\u00eb burokraci e k\u00ebtill\u00eb e panevojshme nuk ka asnj\u00eb logjik\u00eb.\u00a0 \u201cF\u00ebmija merr nj\u00eb kariotip dy jav\u00eb pas lindjes, k\u00ebshtu q\u00eb ligjet dhe aktet n\u00ebnligjore duhet t\u00eb harmonizohen dhe si d\u00ebshmi t\u00eb p\u00ebrdorin k\u00ebt\u00eb dokument, nga lindja deri n\u00eb fund t\u00eb jet\u00ebs&#8221;, thot\u00eb Ida Manton, n\u00ebn\u00eb e nj\u00eb vajze me sindrom\u00ebn Daun, e nj\u00ebkoh\u00ebsisht edhe themeluesja dhe kryetarja e Qendr\u00ebs p\u00ebr Sindrom\u00ebn Daun.<\/p>\n<p>F\u00ebmij\u00ebt kalojn\u00eb n\u00ebp\u00ebr organe t\u00eb ndryshme profesionale p\u00ebr t\u00eb drejta t\u00eb ndryshme. T\u00eb drejtat p\u00ebr mbrojtje sociale dhe t\u00eb f\u00ebmij\u00ebve ushtrohen n\u00eb p\u00ebrputhje me kuadrin ligjor ekzistues dhe m\u00ebnyr\u00ebn tradicionale t\u00eb kategorizimit p\u00ebr aft\u00ebsit\u00eb e kufizuara, nd\u00ebrsa t\u00eb drejtat e arsimimit sipas nj\u00eb metodologjie t\u00eb re &#8211; Klasifikimi Nd\u00ebrkomb\u00ebtar p\u00ebr Funksionim i rekomanduar nga Organizata Bot\u00ebrore e Sh\u00ebndet\u00ebsis\u00eb. E para mb\u00ebshtetet n\u00eb nj\u00eb qasje mjek\u00ebsore, t\u00eb nj\u00ebanshme, me terminologji q\u00eb p\u00ebrforcon paragjykimet, nd\u00ebrsa e dyta nxjerr n\u00eb pah aft\u00ebsit\u00eb, si dhe mb\u00ebshtetjen e nevojshme q\u00eb f\u00ebmija duhet t\u00eb marr\u00eb p\u00ebr t\u00eb g\u00ebzuar mund\u00ebsi t\u00eb barabarta si bashk\u00ebmoshatar\u00ebt e tij dhe p\u00ebr t\u00eb zhvilluar potencialin e tij t\u00eb plot\u00eb. N\u00eb vendin ton\u00eb, n\u00eb vitin 2019, n\u00ebn drejtimin e UNICEF-it dhe me mb\u00ebshtetjen e Ambasad\u00ebs britanike u hap nj\u00eb Qend\u00ebr p\u00ebr Klasifikimin nd\u00ebrkomb\u00ebtar p\u00ebr funksionim.(KNF)<\/p>\n<p>\u201cKy klasifikim me automatiz\u00ebm duhej t\u00eb zbatohej kudo, edhe n\u00eb ligje, e jo t\u00eb kategorizohen, si me pengesa t\u00eb lehta, t\u00eb mesme apo t\u00eb r\u00ebnda n\u00eb zhvillim.\u00a0 N\u00eb vend q\u00eb t\u00eb masim aft\u00ebsit\u00eb e kufizuara, nga viti 2001 duhet t\u00eb masim se sa funksional \u00ebsht\u00eb f\u00ebmija dhe si t&#8217;ia b\u00ebjm\u00eb q\u00eb t\u00eb jet\u00eb edhe m\u00eb funksional.\u00a0 Nga viti 2007, ekziston nj\u00eb klasifikim i p\u00ebrshtatur p\u00ebr f\u00ebmij\u00eb dhe t\u00eb rinj. Kjo \u00ebsht\u00eb m\u00ebnyra e duhur, e jo etiketimi.\u00a0 Nuk mund t\u00eb p\u00ebrcaktojm\u00eb se sa para u takojn\u00eb n\u00eb baz\u00eb t\u00eb nivelit t\u00eb kufizimeve n\u00eb zhvillim.\u00a0 N\u00eb legjislacion vazhdon t\u00eb ket\u00eb konflikt mes dy llojeve t\u00eb metodologjive.\u00a0 \u201cNga nj\u00ebra an\u00eb i sh\u00ebnjojn\u00eb pengesat dhe nga ana tjet\u00ebr duan t\u00eb inkuadrojn\u00eb nomenklatur\u00ebn e bot\u00ebs moderne&#8221;, shton Manton.<\/p>\n<p>Jo t\u00eb gjith\u00eb prind\u00ebrit i njohin t\u00eb drejtat, sepse ato ng\u00ebrthehen n\u00eb ligje t\u00eb ndryshme. M\u00eb s\u00eb shpeshti komunikojn\u00eb me nj\u00ebri-tjetrin n\u00eb rrjetet sociale dhe k\u00ebshtu m\u00ebsojn\u00eb n\u00ebse dhe kur do t\u00eb marrin kompensim financiar, si t\u00eb aplikojn\u00eb p\u00ebr transport publik falas, p\u00ebr parkim, p\u00ebr p\u00ebrjashtim nga pagesat rrugore, p\u00ebr ila\u00e7e falas, p\u00ebr sh\u00ebrbime sh\u00ebndet\u00ebsore apo p\u00ebr hyrje n\u00eb aktivitete kulturore. N\u00ebse ka ndryshime, ato i marrin vesh nga institucionet, nd\u00ebrsa ato nuk kan\u00eb lista elektronike p\u00ebr ndarjen e informacioneve me familjet.<\/p>\n<p>Sa i p\u00ebrket transportit publik falas, n\u00eb konstatimin e dh\u00ebn\u00eb duhet theksuar se f\u00ebmija frekuenton nj\u00eb institucion \u2013 shkoll\u00eb apo qend\u00ebr. Prind\u00ebrit ankohen se f\u00ebmij\u00ebt e mosh\u00ebs parashkollore k\u00ebt\u00eb vit kan\u00eb problem sepse shpeshher\u00eb shoqatat nuk kan\u00eb ambiente t\u00eb disponueshme ose n\u00eb koh\u00eb pandemie nuk rekomandohet vizita e tyre dhe k\u00ebshtu iu duhet t\u00eb aplikojn\u00eb n\u00eb grup p\u00ebrmes nj\u00eb qendre apo shoqate.<\/p>\n<p>\u201cPo ata q\u00eb nuk shkojn\u00eb n\u00eb shkoll\u00eb apo n\u00eb qend\u00ebr? A nuk duhet t\u00eb shkojn\u00eb te mjeku? Po terapit\u00eb e tjera?\u00a0 Disa prej tyre kan\u00eb nevoj\u00eb p\u00ebr terapi fizike, logoped\u00eb, defektolog\u00eb, si t\u00eb mb\u00ebrrijn\u00eb deri tek ta? E nga ana tjet\u00ebr, si do t&#8217;i fusim n\u00eb shkoll\u00eb n\u00ebse nuk kan\u00eb b\u00ebr\u00eb asgj\u00eb n\u00eb vitet m\u00eb t\u00eb hershme t\u00eb zhvillimit?&#8221;, pyesin prind\u00ebrit.<\/p>\n<p>P\u00ebr t\u00eb kap\u00ebrcyer problemet, Manton propozon q\u00eb t\u00eb vendoset nj\u00eb dialog i vazhduesh\u00ebm dhe i rregullt mes Parlamentit, ministrive, organizatave joqeveritare dhe prind\u00ebrve, p\u00ebr t\u00eb ofruar t\u00eb gjitha informacionet dhe sh\u00ebrbimet n\u00eb m\u00ebnyr\u00eb dixhitale, n\u00eb m\u00ebnyr\u00eb q\u00eb t\u00eb mos duhet t\u00eb shkohet pa nevoj\u00eb n\u00eb institucionet n\u00eb kushte pandemie dhe sa m\u00eb shpejt t\u00eb jet\u00eb e mundur, n\u00eb m\u00ebnyr\u00eb elektronike, t\u00eb publikohen n\u00eb nj\u00eb vend t\u00eb gjitha t\u00eb drejtat q\u00eb u takojn\u00eb k\u00ebtyre f\u00ebmij\u00ebve, si dhe m\u00ebnyrat se si duhet t\u00eb ushtrohen ato.<\/p>\n<p>\u201cN\u00ebse un\u00eb si kryetar i nj\u00eb shoqate nuk jam i informuar nga institucionet p\u00ebr ndryshime t\u00eb caktuara ligjore, as p\u00ebr ndryshimin e rregullave dhe seancave publike, si mund ta marr\u00eb at\u00eb informacion nj\u00eb prind nga \u00c7ashka apo Rosomani? Ne jemi nj\u00eb shoqat\u00eb e regjistruar, e megjithat\u00eb, n\u00ebse nuk k\u00ebrkojm\u00eb qasje, nuk do t\u00eb kemi akses te autoritetet dhe listat e tyre t\u00eb distribuimit.\u00a0 N\u00ebse shteti d\u00ebshiron (dhe kjo \u00ebsht\u00eb baza dhe detyrimi i shtetit p\u00ebr nj\u00eb qeverisje t\u00eb mir\u00eb) mund t\u00eb arrihet transparenca dhe \u00e7do prind do t\u00eb mund t\u00eb informohet n\u00eb faqen e internetit dhe t\u00eb aplikoj\u00eb p\u00ebr sh\u00ebrbime t\u00eb ndryshme. Qendrat sociale \u00ebsht\u00eb mir\u00eb t\u00eb fillojn\u00eb nga p\u00ebrdit\u00ebsimi i t\u00eb gjitha informacioneve dhe i kontakteve n\u00eb faqet e internetit, ku figurojn\u00eb telefona statik\u00eb q\u00eb nuk p\u00ebrdoren prej vitesh dhe shpesh adresa t\u00eb pasakta. P\u00ebr t\u00eb pasur nj\u00eb komunikim t\u00eb suksessh\u00ebm dhe n\u00eb koh\u00eb, \u00ebsht\u00eb e nevojshme t\u00eb b\u00ebhet nj\u00eb hart\u00eb e individ\u00ebve dhe familjeve me Sindrom\u00ebn Doun dhe t\u00eb identifikohen nevojat e tyre. Si mundet ndryshe shteti t&#8217;iu siguroj\u00eb mb\u00ebshtetje n\u00ebse nuk e din\u00eb se cil\u00ebt jan\u00eb, ku ndodhen dhe \u00e7far\u00eb kan\u00eb nevoj\u00eb?&#8221;, thot\u00eb Manton.<\/p>\n<p>Ministria e pun\u00ebs dhe politik\u00ebs sociale n\u00eb lidhje me vler\u00ebsimin q\u00eb b\u00ebhet \u00e7do vit, sqaron se Komisioni i Entit p\u00ebr Sh\u00ebndet Mendor n\u00eb m\u00ebnyr\u00eb t\u00eb pavarur p\u00ebrcakton n\u00ebse gjendja e f\u00ebmij\u00ebs \u00ebsht\u00eb e p\u00ebrhershme apo nevojitet nj\u00eb ekzaminim ciklik.\u00a0 N\u00eb k\u00ebto raste shpesh p\u00ebrcaktohet nevoja p\u00ebr nj\u00eb kontroll ciklik, sepse gjendja monitorohet rregullisht gjat\u00eb periudh\u00ebs s\u00eb rritjes.<\/p>\n<p>Nga Ministria b\u00ebjn\u00eb t\u00eb ditur se aplikimi i plot\u00eb i Klasifikimit Nd\u00ebrkomb\u00ebtar n\u00eb vendin ton\u00eb do t\u00eb nis\u00eb n\u00eb gjysm\u00ebn e par\u00eb t\u00eb k\u00ebtij viti. P\u00ebr t\u00eb siguruar nj\u00eb kalim gradual dhe t\u00eb qet\u00eb drejt vler\u00ebsimit t\u00eb ri, duke mos lejuar\u00a0 q\u00eb f\u00ebmij\u00ebt me aft\u00ebsi t\u00eb kufizuara dhe familjet e tyre t\u00eb rrezikohen nga humbja e t\u00eb drejtave t\u00eb tyre, vitet e fundit ishte e nevojshme q\u00eb qytetar\u00ebt t\u00eb kalonin n\u00eb t\u00eb dyja procedurat. Kjo situat\u00eb, thon\u00eb nga Ministria, do t\u00eb tejkalohet me futjen sistematike t\u00eb Klasifikimit Nd\u00ebrkomb\u00ebtar n\u00eb gjysm\u00ebn e par\u00eb t\u00eb k\u00ebtij viti.<\/p>\n<p>\u201cKalimi nga zhargoni i quajtur \u2018kategorizimi\u2019 i f\u00ebmij\u00ebve me aft\u00ebsi t\u00eb kufizuara n\u00eb nj\u00eb kategorizim m\u00eb mendjehapur si klasifikimi nd\u00ebrkomb\u00ebtar \u00ebsht\u00eb nj\u00eb proces kompleks dhe afatgjat\u00eb. P\u00ebr k\u00ebt\u00eb q\u00ebllim, n\u00eb dhjetor t\u00eb vitit t\u00eb kaluar, Kuvendi miratoi ndryshimet dhe plot\u00ebsimet p\u00ebr Ligjin p\u00ebr Mbrojtje Sociale (Gazeta Zyrtare e RSM 294 nga 27.12.2021) dhe p\u00ebr Ligjin p\u00ebr Mbrojtjen e F\u00ebmij\u00ebve (Gazeta Zyrtare e RSM 294 nga 27.12.2021). \u201cNdryshimet e miratuara n\u00ebnkuptojn\u00eb p\u00ebrshtatje t\u00eb korniz\u00ebs ligjore n\u00eb fush\u00ebn e mbrojtjes sociale dhe t\u00eb f\u00ebmij\u00ebve p\u00ebr aplikimin e klasifikimit t\u00eb ri\u201d, thon\u00eb nga Ministria.<\/p>\n<p>P\u00ebrve\u00e7 ndryshimeve t\u00eb gjera n\u00eb kuadrin ligjor, procesi p\u00ebrfshin dhe vendosjen e organeve t\u00eb reja eksperte &#8211; sh\u00ebrbime t\u00eb vler\u00ebsimit funksional. Kjo reform\u00eb zbatohet bashk\u00ebrisht nga Ministrit\u00eb e Pun\u00ebs, Sh\u00ebndet\u00ebsis\u00eb dhe Arsimit me mb\u00ebshtetjen teknike t\u00eb UNICEF-it. Deri n\u00eb fund t\u00eb vitit 2021, pes\u00eb nga n\u00ebnt\u00eb sh\u00ebrbimet e planifikuara ishin plot\u00ebsisht funksionale- Shkupi, Manastiri, Strumica dhe Gostivari.<\/p>\n<p>\u201cK\u00ebto ndryshime mund\u00ebsojn\u00eb q\u00eb ministri i pun\u00ebs dhe politik\u00ebs sociale, n\u00eb marr\u00ebveshje me ministrin e sh\u00ebndet\u00ebsis\u00eb dhe t\u00eb arsimit dhe shkenc\u00ebs, t\u00eb sjell\u00eb akt n\u00ebnligjor &#8211; rregullore p\u00ebr vler\u00ebsimin funksional t\u00eb f\u00ebmij\u00ebve dhe t\u00eb rinjve deri n\u00eb mosh\u00ebn 26 vje\u00e7e n\u00eb afat prej tre muajve nga dita e ndryshimit t\u00eb ligjit. Ata tashm\u00eb kan\u00eb p\u00ebrgatitur dhe harmonizuar draft-tekstin e rregullores dhe do t\u00eb miratohet deri n\u00eb fund t\u00eb marsit 2022. N\u00eb p\u00ebrgjigje t\u00eb t\u00eb gjitha k\u00ebrkesave t\u00eb qytetar\u00ebve p\u00ebr vler\u00ebsimin e llojit dhe shkall\u00ebs s\u00eb aft\u00ebsis\u00eb s\u00eb kufizuar dhe nevojave t\u00eb ve\u00e7anta t\u00eb paraqitura deri n\u00eb dit\u00ebn e miratimit t\u00eb rregullores, vler\u00ebsimi i llojit dhe shkall\u00ebs s\u00eb aft\u00ebsis\u00eb s\u00eb kufizuar (\u201ckategorizimi\u201d) i f\u00ebmij\u00ebve do t\u00eb b\u00ebhet sipas rregulloreve aktuale&#8221;, thon\u00eb nga Ministria.<\/p>\n<p>Me miratimin e rregullores do t\u00eb shfuqizohen komisionet ekzistuese p\u00ebr kategorizim, nd\u00ebrsa vler\u00ebsimi i f\u00ebmij\u00ebve dhe t\u00eb rinjve deri\u00a0 26 vje\u00e7 n\u00eb vend do t\u00eb b\u00ebhet ekskluzivisht n\u00eb baz\u00eb t\u00eb Klasifikimit Nd\u00ebrkomb\u00ebtar. T\u00eb dy sh\u00ebrbimet p\u00ebr vler\u00ebsim t\u00eb funksionalitetit do t\u00eb ken\u00eb p\u00ebrgjegj\u00ebsi t\u00eb plot\u00eb p\u00ebr zbatimin e vler\u00ebsimit.<\/p>\n<p><em><strong>ZH. ZDRAVKOVSKA<\/strong><\/em><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n\n<div style=\"font-size: 0px; height: 0px; line-height: 0px; margin: 0; padding: 0; clear: both;\"><\/div>","protected":false},"excerpt":{"rendered":"<p>Edhe pse Sindroma Daun \u00ebsht\u00eb nj\u00eb diagnoz\u00eb p\u00ebr t\u00ebr\u00eb jet\u00ebn, f\u00ebmij\u00ebt t\u00eb cil\u00ebt kan\u00eb \u00e7rregullim hormonal, \u00e7do vit, jan\u00eb t\u00eb [&hellip;]<\/p>\n","protected":false},"author":25,"featured_media":165975,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_mo_disable_npp":"no","inline_featured_image":false},"categories":[3085],"tags":[],"imageURL":"https:\/\/sdk.mk\/wp-content\/uploads\/2022\/02\/Ida-and-Lucia-Manton1-650x362.jpg","thumbURL":"https:\/\/sdk.mk\/wp-content\/uploads\/2022\/02\/Ida-and-Lucia-Manton1-250x139.jpg","categoryNames":["Histori t\u00eb parr\u00ebfyera"],"feature_caption":"Fakti q\u00eb ata kan\u00eb Sindrom\u00ebn Doun nuk ndryshon. Pse \u00e7do vit? Kromozomi nuk do t\u00eb zhduket. 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