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Rządowy projekt „Za Życiem” realizuje propozycje Ordo Iuris i tworzy ramy przyszłego systemu wsparcia

prawy.pl_images_nowe_rozne_a_z_o_ordoiurisRządowy projekt ustawy o wsparciu kobiet w ciąży i ich rodzin „Za życiem” tworzy ramy prawne dla kompleksowego systemu wsparcia kobiet i rodzin borykających się z trudnościami wiążącymi się z ciążą powikłaną i wychowywaniem niepełnosprawnego dziecka. Projekt uwzględnia wiele propozycji przedstawionych w czerwcu przez Instytut Ordo Iuris. Jego pełna ocena będzie możliwa po przedstawieniu projektów rozporządzeń wykonawczych.

Eksperci Instytutu Ordo Iuris zwracają uwagę, że podjęte przez rząd działania w zakresie zwiększenia pomocy dla takich rodzin stanowią powielenie części propozycji zawartych w szerokim pakiecie zmian legislacyjnych zaprezentowanych i przekazanych przez Instytut właściwym ministrom jeszcze w czerwcu br. Znajdujące się w projekcie ustawy „Za życiem” rozwiązania, w tym zapewnienie dostępu do poradnictwa w zakresie rozwiązań wspierających rodzinę i usług koordynacyjno-opiekuńczo-rehabilitacyjnych, wsparcia psychologicznego, zapewnienia opieki paliatywnej i hospicyjnej oraz rehabilitacji leczniczej, zaopatrzenia w wyroby medyczne, czy wreszcie zapewnienia pomocy prawnej i zbiorczej informacji o przysługujących uprawnieniach znajdowały się w projektach ustaw i rozporządzeń, które zostały przedłożone ministerstwom kilka miesięcy temu.

Wiele z zaprezentowanych rozwiązań będzie można poddać ocenie dopiero po przedstawieniu projektów rozporządzeń wykonawczych, które mają być gotowe do końca 2016 r. Instytut Ordo Iuris pozytywnie ocenia rządowy projekt „Za życiem” jako mogący tworzyć ramy funkcjonowania takiego systemu. Polski rząd stoi przed szansą jakościowej zmiany w zakresie pomocy oferowanej rodzinom niepełnosprawnych dzieci.

Mając na uwadze, że prace nad rozporządzeniami wykonawczymi ciągle trwają, Instytut już teraz podkreśla, że program nie powinien ograniczać się do jednorazowego (świadczenie w wysokości 4000 zł) lub krótkoterminowego wsparcia w oparciu o „miękkie” instrumenty pomocowe, ale powinien w sposób bardzo konkretny wychodzić naprzeciw najpilniejszym potrzebom rodzin dzieci, które narodziły się pomimo kwalifikacji umożliwiającej obecnie ich aborcyjne uśmiercenie. Te potrzeby to przede wszystkim:

1. reforma funkcjonowania hospicjów perinatalnych i opieki paliatywnej dla dzieci. To w tych specjalistycznych instytucjach rodzina znajduje pomoc w przygotowaniu się do narodzin swojego chorego dziecka, trwania przy nim i jego godnej śmierci. Pozytywnie oceniamy wprowadzenie możliwości korzystania z opieki hospicjum poza kolejnością jednak konieczna reforma nie może ograniczać się do tego rodzaju udogodnienia.

Instytut Ordo Iuris przedłożył stosowny projekt rozporządzenia przewidujący stworzenie odrębnej regulacji dedykowanej tylko pediatrycznej opiece paliatywnej (w tym perinatalnej).

2. wsparcie w wychowywaniu niepełnosprawnego dziecka. Gdy choroba na którą cierpi dziecko nie ma charakteru letalnego kluczową staje pomoc z zakresu rehabilitacji, leczenia i opieki. Pozytywnie ocenić należy, jak powyżej, przyznanie pierwszeństwa w korzystaniu z określonych świadczeń oraz prawa do bezpłatnych wyrobów medycznych – jednak jego ostateczny zakres znajdzie swoje doprecyzowanie dopiero w rozporządzeniu. Cała reszta rządowego projektu w tym obszarze stanowi bardziej deklarację niż propozycję konkretnej zmiany. Spodziewamy się, że takowe zostaną zaprezentowane w szykowanym rozporządzeniu.  

Instytut Ordo Iuris przedłożył stosowny projekt rozporządzenia przewidujący wprowadzenie pediatrycznej opieki długoterminowej domowej jako osobnej kategorii opieki długoterminowej udzielanej w warunkach domowych – w ramach tej opieki miałaby się koncentrować szeroka pomoc dzieciom z najcięższymi wadami. Jak pokazuje doświadczenie, rodzice najczęściej nie chcą „oddawać” dziecka do zewnętrznej instytucji. Potrzebują przede wszystkim wsparcia „na miejscu”.

3. Wsparcie o charakterze niematerialnym – pomoc psychologiczna i świadczenia wspierające. Projekt, co należy ocenić jednoznacznie pozytywnie, przewiduje zapewnienie potrzebującym tego osobom poradnictwa w zakresie rozwiązań wspierających rodzinę. Otwartym pozostaje pytanie, czy osobą właściwą do koordynowania tego rodzaju wsparcia powinien być asystent rodziny – specyfika jego pracy związana jest bowiem z pomocą rodzinom przeżywającym trudności w wypełnianiu funkcji opiekuńczo-wychowawczych. Wydaje się natomiast, że pomoc rodzinom związana z powikłaniami ciąży nie powinna być utożsamiana z pomocą społeczną.

Instytut Ordo Iuris proponował stworzenie specjalnego „świadczenia wspierającego” jako osobnej kategorii świadczeń rodzinnych o których mowa w ustawie z 28 listopada 2003 r. o świadczeniach rodzinnych.

Powyższe propozycje zasługują na pozytywną ocenę, ale powinny stanowić fragment szerszego systemu rozwiązań wspierających. Jego dopełnieniem powinny być zmiany w zakresie funkcjonowania domów samotnej matki, procedury adopcyjnej czy świadczeń opiekuńczych. Projektowane rozwiązania nie powinny także pomijać żadnej grupy dzieci niepełnosprawnych, w tym tych, które nabyły niepełnosprawność już po urodzeniu.

Instytut Ordo Iuris

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