30° compleanno, riflettere su un giusto adeguamento

7 febbraio 2022 – Il 5 febbraio del 1992 veniva approvata la nota Legge 104 che regola i diritti delle persone con disabilità in ognuno degli aspetti della vita: scuola, lavoro, società.
In occasione della ricorrenza, l’Osservatorio malattie rare, l’Alleanza malattie rare e la Uildm (Unione italiana lotta alla distrofia muscolare) hanno organizzato un confronto pubblico, in modalità webinar, svoltosi con la partecipazione di parlamentari italiani ed europei ed aperto dal videomessaggio del Ministro per le Disabilità Erika Stefani.
Il webinar è stato l’occasione per richiedere, da parte degli enti promotori del convegno, un tavolo tecnico di confronto con l’Inps ed i ministeri competenti. 
“Dopo trenta anni dall’approvazione di questa eccezionale legge, che ha saputo rispondere ai bisogni di milioni di persone, è necessario rilanciare un dialogo che parta dai diritti delle persone con disabilità, assumendo come punto di riferimento la Convenzione delle Nazioni Unite sui diritti delle persone con disabilità” – dall’intervento di apertura al webinar affidato alla la Sen. Paola Binetti, Presidente dell’Intergruppo Parlamentare per le Malattie, che ha proseguito – “Quindici anni fa l’Italia ha sottoscritto il protocollo attuativo dell’Onu, era il 30 marzo 2007, ma sono molte le cose che da allora sono rimaste in sospeso e il recente Decreto-legge elaborato dal ministero della Disabilità, pur partendo dai diritti delle persone con disabilità, ha un carattere ancora troppo generale e va tradotto in decreti attuativi concreti e puntuali. L’inserimento dei più giovani nella scuola e l’inserimento dei giovani nel mondo del lavoro sono ancora largamente inadeguati. I servizi che vengono offerti sono frammentari e alla figura del caregiver non viene offerta nessuna garanzia, né sul piano personale, né su quello professionale”.
Ilaria Vacca e Roberta Venturi, Responsabili dello Sportello Legale “Dalla parte dei rari” – Osservatorio Malattie Rare, nel loro intervento al webinar hanno sottolineato come “Troppo spesso la 104, così come l’invalidità civile, non viene riconosciuta a causa di una patologia poco nota, con conseguenze devastanti che si traducono nel mancato riconoscimento delle necessità socio-assistenziali ed economiche delle persone con patologie dagli esiti fortemente invalidanti. Si tratta di una legge straordinaria, che ha dato vita allo screening neonatale obbligatorio in Italia, che ha sancito il diritto allo studio delle persone con disabilità. Una legge che però è superata per troppi aspetti, primo tra tutti quello linguistico, alla quale non può essere affidata per intero la tutela delle persone e delle famiglie in situazione di estrema fragilità. Per questo chiediamo, insieme a Uildm e all’Alleanza Malattie Rare, che sia istituito un tavolo di confronto tra il mondo civico, i pazienti e gli enti competenti, per attuare soluzioni pratiche che rispondano alle necessità di tutela delle persone con malattie rare e delle loro famiglie”.

Venerdì 11 febbraio, dalle ore 12.00 alle ore 13.00, Radio ANMIL Network dedicherà la diretta all’anniversario della Legge 104 con diversi esperti in materia di disabilità

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