\u010cT 1<\/p>\n\n\n\n
\u010cern\u00e9 ovce <\/p>\n\n\n\n
Matka posti\u017een\u00e9 d\u00edvky marn\u011b bojovala s \u00fa\u0159ady o v\u00fd\u0161i p\u0159\u00edsp\u011bvku na p\u00e9\u010di. posudkov\u00fd l\u00e9ka\u0159 m\u011bl na stav d\u00edt\u011bte jin\u00fd n\u00e1zor ne\u017e jeho o\u0161et\u0159uj\u00edc\u00ed l\u00e9ka\u0159. V \u010cern\u00fdch ovc\u00edch jsme o p\u0159\u00edpadu vys\u00edlali report\u00e1\u017e na za\u010d\u00e1tku leto\u0161n\u00edho roku. Jak to nakonec dopadlo?<\/p>\n\n\n\n
Martina Bro\u017eov\u00e1, matka pacientky<\/strong> Sylvinka trp\u00ed vz\u00e1cn\u00fdm syndromem, kter\u00fd se naz\u00fdv\u00e1 syndrom Dravetov\u00e9. Je to jedna z nejz\u00e1va\u017en\u011bj\u0161\u00edch epilepsi\u00ed vznikaj\u00edc\u00ed v d\u011btsk\u00e9m v\u011bku a projevuje se velmi t\u011b\u017ek\u00fdmi \u010dast\u00fdmi epileptick\u00fdmi z\u00e1chvaty, ale z\u00e1rove\u0148 s sebou ta nemoc nese je\u0161t\u011b dal\u0161\u00ed posti\u017een\u00ed. <\/p>\n\n\n\n redaktorka<\/strong> P\u0159esto\u017ee tyto d\u011bti na prvn\u00ed pohled nep\u016fsob\u00ed tak, \u017ee by byly v\u00e1\u017en\u011b nemocn\u00e9, realita je jin\u00e1. <\/p>\n\n\n\n Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK a FN Motol, Fakultn\u00ed nemocnice v Motole<\/strong> Krom\u011b ment\u00e1ln\u00ed retardace maj\u00ed probl\u00e9my s hyperaktivitou, s poruchou pozornosti, maj\u00ed autistick\u00e9 rysy, maj\u00ed v\u00fdznamn\u00e9 poruchy chov\u00e1n\u00ed, maj\u00ed tzv. moze\u010dkov\u00e9 p\u0159\u00edznaky, tak\u017ee jsou nejist\u00fd v pohybu, padaj\u00ed.<\/p>\n\n\n\n Lucie Miczov\u00e1, \u0159editelka organizace na pomoc nemocn\u00fdm s epilepsi\u00ed, Epicana z. \u00fa.<\/strong> Ty d\u011bti mus\u00ed b\u00fdt st\u00e1le pod dohledem, proto\u017ee i z\u00e1chvat m\u016f\u017ee p\u0159ij\u00edt kdykoliv a je opravdu \u017eivotu nebezpe\u010dn\u00fd. <\/p>\n\n\n\n redaktorka<\/strong> Proto maj\u00ed takto nemocn\u00e9 d\u011bti n\u00e1rok na p\u0159\u00edsp\u011bvek na p\u00e9\u010di. Dcera pan\u00ed Bro\u017eov\u00e9 m\u011bla t\u0159et\u00ed stupe\u0148, co\u017e znamen\u00e1, \u017ee pot\u0159ebovala v\u011bt\u0161\u00ed p\u00e9\u010di. <\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> Sylvince bylo p\u0159izn\u00e1no \u0161est oblast\u00ed t\u011bch pot\u0159eb pomoci, jednalo se o osobn\u00ed aktivity, p\u00e9\u010di o zdrav\u00ed, t\u011blesnou hygienu, obl\u00e9k\u00e1n\u00ed, obouv\u00e1n\u00ed, komunikaci a orientaci. <\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> O p\u0159\u00edsp\u011bvku na p\u00e9\u010di rozhoduje \u00da\u0159ad pr\u00e1ce, ale faktick\u00e9 hodnocen\u00ed d\u011bl\u00e1 posudkov\u00fd l\u00e9ka\u0159. Ten p\u0159i posledn\u00ed kontrole konstatoval, \u017ee Sylvinka, kter\u00e1 je na \u00farovni t\u0159\u00edlet\u00e9ho d\u00edt\u011bte, nezvl\u00e1d\u00e1 jen p\u011bt pot\u0159eb, a p\u0159\u00edsp\u011bvek na p\u00e9\u010di j\u00ed byl sn\u00ed\u017een na druh\u00fd stupe\u0148. A to byl pro Bro\u017eovy velk\u00fd probl\u00e9m. Ve t\u0159et\u00edm stupni toti\u017e dost\u00e1vali 16 000 K\u010d.<\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> A kdy\u017e jsme nyn\u00ed spadli do toho druh\u00e9ho, tak \u010din\u00ed 7 400 K\u010d m\u011bs\u00ed\u010dn\u011b, co\u017e je samoz\u0159ejm\u011b markantn\u00ed rozd\u00edl.<\/p>\n\n\n\n redaktorka<\/strong> A to na celodenn\u00ed p\u00e9\u010di a rehabilitace nesta\u010dilo. Po\u017e\u00e1dali jsme o vyj\u00e1d\u0159en\u00ed \u010ceskou spr\u00e1vu soci\u00e1ln\u00edho zabezpe\u010den\u00ed i \u00da\u0159ad pr\u00e1ce a dostali jsme odpov\u011b\u010f, \u017ee se vyjad\u0159ovat nebudou. Nikdo nerozporoval to, \u017ee Sylvinka pot\u0159ebuje pomoc s obl\u00e9k\u00e1n\u00edm, hygienou, p\u00e9\u010d\u00ed o zdrav\u00ed, aktivitami a komunikac\u00ed. Podle posudkov\u00e9ho l\u00e9ka\u0159e ale nepot\u0159ebovala pomoc s orientac\u00ed. <\/p>\n\n\n\n Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK a FN Motol, Fakultn\u00ed nemocnice v Motole<\/strong> Oni se neorientuj\u00ed v prostoru a taky ned\u00e1vaj\u00ed pozor nebo nemaj\u00ed takov\u00fd ten spr\u00e1vn\u00fd pud sebez\u00e1chovy. <\/p>\n\n\n\n V\u00e1clav Kr\u00e1sa, p\u0159edseda N\u00e1rodn\u00ed rady osob se zdravotn\u00edm posti\u017een\u00edm<\/strong> Posudkov\u00fd l\u00e9ka\u0159 nem\u016f\u017ee napsat nebo neuznat orientaci, kdy\u017e ten odborn\u00fd l\u00e9ka\u0159 \u0159\u00edk\u00e1: ta d\u00edvka se neorientuje. <\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> Po orientaci nebyla Sylvince uznan\u00e1 ani pot\u0159eba stravov\u00e1n\u00ed, p\u0159esto\u017ee si sama neukousne ani chleba a nem\u016f\u017ee se ani norm\u00e1ln\u011b nap\u00edt. Pro\u010d pije z br\u010dka? <\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> Ona by sama p\u0159i \u00fachopu toho hrne\u010dku m\u011bla rozt\u0159esen\u00fd pohyb, tak\u017ee by to pit\u00ed na sebe cel\u00fd vylila.<\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> Posledn\u00ed pot\u0159eba, kter\u00e1 Sylvince nebyla uznan\u00e1, je v\u00fdkon fyziologick\u00e9 pot\u0159eby, co\u017e znamen\u00e1, \u017ee by m\u011bla zvl\u00e1dnout doj\u00edt si na z\u00e1chod.<\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> Ona \u00fapln\u011b nerozezn\u00e1 sama v sob\u011b tu pot\u0159ebu, \u017ee na ten z\u00e1chod m\u00e1 nutk\u00e1n\u00ed, tak\u017ee ji p\u0159es den mus\u00edme upozor\u0148ovat, \u017ee je pot\u0159eba se doj\u00edt vy\u010d\u016frat, a na ten z\u00e1chod j\u00ed mus\u00edme pomoct.<\/p>\n\n\n\n Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK a FN Motol, Fakultn\u00ed nemocnice v Motole<\/strong> Ona pot\u0159ebuje obslou\u017eit vlastn\u011b ve v\u0161ech z\u00e1kladn\u00edch funkc\u00edch \u017eivota.<\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> Posudkov\u00fd l\u00e9ka\u0159 to ale vid\u011bl jinak. Proto se pan\u00ed Bro\u017eov\u00e1 proti jeho rozhodnut\u00ed odvolala. A my jsme \u010dekali, jak Ministerstvo pr\u00e1ce a soci\u00e1ln\u00edch v\u011bc\u00ed o odvol\u00e1n\u00ed rozhodne.<\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> Po odvys\u00edl\u00e1n\u00ed n\u00e1s Ministerstvo pr\u00e1ce vyzvalo k dolo\u017een\u00ed dokument\u016f, l\u00e9ka\u0159sk\u00fdch zpr\u00e1v nebo n\u011bjak\u00fdch nov\u00fdch podklad\u016f, jestli m\u00e1me k dispozici, my jsme m\u011bli dv\u011b nov\u00e9 l\u00e9ka\u0159sk\u00e9 zpr\u00e1vy aktu\u00e1ln\u00ed, tak\u017ee ty jsme je\u0161t\u011b k tomu dokl\u00e1dali.<\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> Posudkov\u00e1 komise rozhodovala o Sylvince znovu a i s maminkou si ji pozvala. Posudkov\u00e1 l\u00e9ka\u0159ka pan\u00ed Bro\u017eov\u00e9 \u0159ekla, \u017ee pot\u0159eba stravov\u00e1n\u00ed jim uznan\u00e1 nebude.<\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> N\u00e1m tam bylo vlastn\u011b \u0159e\u010deno, \u017ee pokud se to d\u00edt\u011b, respektive i Sylvinka zvl\u00e1dne naj\u00edst sama l\u017e\u00edc\u00ed, tak u\u017e oni tu pot\u0159ebu stravov\u00e1n\u00ed nem\u016f\u017eou p\u0159iznat, jako \u017ee ji nezvl\u00e1d\u00e1me.<\/p>\n\n\n\n redaktorka<\/strong> Obr\u00e1tili jsme se na Ministerstvo pr\u00e1ce a soci\u00e1ln\u00edch v\u011bc\u00ed s \u017e\u00e1dost\u00ed o vyj\u00e1d\u0159en\u00ed, ale to se n\u00e1m k p\u0159\u00edpadu pan\u00ed Bro\u017eov\u00e9 vyj\u00e1d\u0159it odm\u00edtlo. Nicm\u00e9n\u011b ohledn\u011b dal\u0161\u00edch pot\u0159eb posudkov\u00e1 komise n\u00e1zor u\u017e zm\u011bnila. <\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> To, \u017ee n\u00e1m p\u0159iznali zp\u00e1tky tu orientaci a nov\u011b p\u0159iznali ten v\u00fdkon fyziologick\u00e9 pot\u0159eby, sta\u010dilo k tomu, abychom spl\u0148ovali pot\u0159ebn\u00fd po\u010det t\u011bch bod\u016f a dos\u00e1hli tak na ten t\u0159et\u00ed stupe\u0148 p\u0159\u00edsp\u011bvku na p\u00e9\u010di. <\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> Toto rozhodnut\u00ed plat\u00ed i zp\u011btn\u011b, a tak pan\u00ed Bro\u017eov\u00e1 dostane vyplacen\u00fd tak\u00e9 finan\u010dn\u00ed rozd\u00edl za dobu, co jim byl p\u0159\u00edsp\u011bvek sn\u00ed\u017een na druh\u00fd stupe\u0148. Jedn\u00e1 se o \u010d\u00e1stku ve v\u00fd\u0161i 70 000 K\u010d. <\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> Nen\u00ed to rozhodn\u011b nic jednoduch\u00fdho se za ty svoje pr\u00e1va takhle rv\u00e1t a i d\u00edky va\u0161\u00ed pomoci v\u011b\u0159\u00edm tomu, \u017ee to prost\u011b dopadlo tak, jak m\u011blo. <\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> Bro\u017eovi by uv\u00edtali i p\u0159\u00edsp\u011bvek na auto, proto\u017ee Sylvinku ka\u017ed\u00fd den mus\u00ed vozit do speci\u00e1ln\u00ed \u0161koly. <\/p>\n\n\n\n Martina Bro\u017eov\u00e1, matka pacientky<\/strong> Samoz\u0159ejm\u011b by se n\u00e1m hodilo n\u011bjak\u00e9 kvalitn\u00ed auto t\u00edm, \u017ee je to pro n\u00e1s ka\u017edodenn\u00ed sou\u010d\u00e1st na\u0161eho \u017eivota.<\/p>\n\n\n\n Petr Mikysek, advok\u00e1t<\/strong> Na p\u0159\u00edsp\u011bvek na po\u0159\u00edzen\u00ed automobilu maj\u00ed n\u00e1rok osoby, kter\u00e9 maj\u00ed bu\u010f t\u011b\u017ekou vadu nosn\u00e9ho nebo pohybov\u00e9ho \u00fastroj\u00ed, d\u00e1le osoby s autistickou poruchou s t\u011b\u017ek\u00fdm funk\u010dn\u00edm posti\u017een\u00edm a kone\u010dn\u011b osoby s t\u011b\u017ekou nebo hlubokou ment\u00e1ln\u00ed retardac\u00ed. <\/p>\n\n\n\n Bohunka Koci\u00e1nov\u00e1, redaktorka<\/strong> Sylvinka m\u00e1 ale jen st\u0159edn\u00ed ment\u00e1ln\u00ed retardaci. <\/p>\n\n\n\n V\u00e1clav Kr\u00e1sa, p\u0159edseda N\u00e1rodn\u00ed rady osob se zdravotn\u00edm posti\u017een\u00edm<\/strong> Pokud ta posuzovan\u00e1 osoba m\u00e1 pouze st\u0159edn\u00ed ment\u00e1ln\u00ed retardaci, tak ten p\u0159\u00edsp\u011bvek na n\u00e1kup motorov\u00e9ho vozidla nem\u016f\u017ee b\u00fdt p\u0159izn\u00e1n. <\/p>\n\n\n\n Petr Mikysek, advok\u00e1t<\/strong> Lze nicm\u00e9n\u011b doporu\u010dit, aby ta ment\u00e1ln\u00ed retardace byla v pr\u016fb\u011bhu \u010dasu znovu p\u0159ezkoum\u00e1na, proto\u017ee ta se m\u016f\u017ee samoz\u0159ejm\u011b zhor\u0161ovat a v n\u011bjak\u00e9 f\u00e1zi m\u016f\u017ee skute\u010dn\u011b klesnout do toho p\u00e1sma t\u00e9 t\u011b\u017ek\u00e9 ment\u00e1ln\u00ed retardace, kde u\u017e ten n\u00e1rok na p\u0159\u00edsp\u011bvek na auto vznik\u00e1. <\/p>\n\n\n\n <\/p>\n","protected":false},"excerpt":{"rendered":" \u010cT 1 \u010cern\u00e9 ovce Matka posti\u017een\u00e9 d\u00edvky marn\u011b bojovala s \u00fa\u0159ady o v\u00fd\u0161i p\u0159\u00edsp\u011bvku na p\u00e9\u010di. posudkov\u00fd l\u00e9ka\u0159 m\u011bl na stav d\u00edt\u011bte jin\u00fd n\u00e1zor ne\u017e […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":24716,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-60741","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/60741","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=60741"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/60741\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/24716"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=60741"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=60741"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=60741"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}