L’U.F.Ha. in audizione al Senato

Audizione XI Commissione Lavoro Pubblico e Privato, Previdenza Sociale del Senato della Repubblica

L’U.F.Ha. ringrazia l’XI Commissione Lavoro Pubblico e Privato, Previdenza Sociale del Senato della Repubblica per l’opportunità che le è data di esprimere le proprie osservazioni in merito ai disegni di legge n.n. 55,281,555,698 e 853, finalizzati al riconoscimento giuridico ed economico del caregiver familiare.

È opportuno premettere che l’U.F.Ha. si è costituita nel 1983 riunendo comitati di genitori già attivi negli anni 70, oggi perciò annovera fra i suoi soci molti genitori anziani, stremati da anni di cure e di assistenza prestate a figli disabili gravi ormai adulti, rimasti in casa per la totale mancanza di alternative.

I disegni di legge in esame meritano apprezzamento per la loro valenza civile a sostegno di comportamenti solidali di alto contenuto etico ed anche economico che vanno al di là degli obblighi di assistenza sanciti dal Codice Civile, tuttavia, sono orientati prevalentemente ai caregivers coinvolti in queste situazioni per un periodo della loro vita, infatti sfiorano appena la situazione dei caregivers che sono genitori di persone in situazione di grave disabilità impossibilitate a lavorare ed a rendersi in qualche modo indipendenti dalle cure familiari.

L’art.3 comma 1 del d.l. 0853, che esprime un concetto sotteso anche negli altri d.l. recita «L’assistito presta personalmente o attraverso l’amministratore di sostegno il consenso alla scelta del proprio caregiver familiare, salvi i casi di interdizione o inabilitazione nei quali il consenso è prestato rispettivamente dal tutore o dal curatore», non si attaglia alle  situazioni su cui vogliamo richiamare l’attenzione, ovvero quelle in cui né il caregiver,  né tantomeno l’assistito, hanno avuto alcuna possibilità di scelta eticamente accettabile trattandosi appunto di genitori e di figli con disabilità.

Il 49,9 % delle persone con grave disabilità, non conseguente ai problemi dell’invecchiamento, vive con i propri genitori, di queste, oltre il 30% sono affidate alle cure di genitori anziani; (c’è poi il 54% di persone con disabilità che vivono da sole e possono contare soltanto su familiari non conviventi mentre, ben il 20%, non riceve alcun tipo di aiuto)[1].

Una legge che intenda salvaguardare i diritti economici e di salute di tutti i caregivers non può non normare la specificità e la complessità dei problemi di questi genitori che si prendono cura di figli in situazione di grave disabilità.

  • Gli oneri, i problemi, lo stress, le ansie specifiche delle situazioni che vivono questi caregivers sono legati in massima parte alla mancata attuazione dell’ampia e civile legislazione in difesa dei diritti delle persone con disabilità (vedi a puro titolo esemplificativo l’allegato 1). In sostanza non si possono negare alle persone con disabilità i loro diritti, esasperando nel contempo le condizioni di vita anche di chi se ne prende cura, e pensare che, alla fine, la soluzione sia semplicemente concedere al ceregiver un riconoscimento giuridico ed un ristoro economico, in alcuni casi importante, ma comunque marginale nel complesso della situazione considerata. Serve poco o nulla il «supporto psicologico nella ricerca e nel mantenimento del benessere e dell’equilibrio personale e familiare, per prevenire rischi di malattie da stress psico-fisico» (art. 5 comma 2l del d.l. 0853). Serve invece un forte richiamo, con riferimenti alla legislazione statale e regionale, espresso con chiarezza nell’articolato della legge, in merito a quanto sopra discusso.
  • Entrando nello specifico di alcuni articoli, ci riferiamo all’art.5 commi f) e g) dello stesso d.l. 0853, crediamo pensati con le migliori intenzioni ma, calati nella realtà rischiano di discriminare quel circa 70% di persone con disabilità, assistite da caregivers non conviventi, o non assistite affatto f) percorsi preferenziali nelle strutture sanitarie al fine di ridurre i tempi di attesa per l’accesso alle prestazioni sanitarie per il caregiver familiare e per l’assistito; g) il rilascio di apposita tessera di riconoscimento come caregiver familiare, al fine di consentire forme di priorità nel disbrigo di pratiche amministrative svolte nell’interesse dell’assistito e del caregiver familiare stesso.

Il presidente

Guido Trinchieri

[1] Fonte: ISTAT audizione dell’ottobre 2014

Scarica la lettera per l’incontro di U.F.Ha. con il Ministro Fontana.

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