Conferenza nazionale della famiglia

Più forte la famiglia più forte il paese

La vita ordinaria della famiglia che si prende cura di figli con disabilità è una sorta di laboratorio nel quale, oltre ai problemi specifici, sono esaltati ed esasperati tutti i
problemi della famiglia dei nostri giorni.

– Conciliazione famiglia-lavoro,
nel caso siano presenti figli con disabilità il problema di ogni famiglia di conciliare
l’attività lavorativa con le esigenze dei figli non è, come di norma, limitato nel tempo
ma incombe sull’intero ciclo della vita dei genitori;

– Economia familiare,
la mancanza di servizi appropriati a supporto dell’alto impegno che comporta
crescere un figlio con disabilità costringe spesso uno dei genitori, quasi sempre la
madre, a rinunciare al lavoro, provocando, oltre alla frustrazione personale,
l’impoverimento della famiglia, anche perché il padre ben difficilmente potrà
impegnarsi per una carriera e conseguire i relativi miglioramenti economici

– Mancanza di servizi di sostegno alla famiglia,
l’impatto della disabilità dei propri figli su una giovane coppia è dirompente da tutti i
punti di vista: è l’inizio di un doloroso percorso per la coppia o, non di rado, per il
genitore che non” scappa”. Non è semplice prendere atto che il proprio figlio non sarà
calciatore, ingegnere, insegnante, ma neppure giramondo, scavezzacollo, artista o
barbone…ma sarà un “bimbo” ancora quando i genitori, per l’età, avranno esaurito
ogni energia vitale. In questo percorso le famiglie sono sole. Quanti e quali consultori
hanno specialisti preparati per supportare le famiglie in queste situazioni? Quali i
supporti concreti?

– Problemi educativi
fino a non molti anni fa era opinione diffusa, anche fra” gli addetti ai lavori” che,
specialmente la disabilità intellettiva e relazionale, non meritasse cure mediche e men
che meno impegno formativo ed educativo. La cultura su questi temi è
profondamente cambiata, l’inclusione scolastica, fra luci ed ombre, è comunque una
realtà. La pedagogia speciale e la didattica, tuttavia, non sempre sono patrimonio del
corpo docente nel suo insieme. Anche per le famiglie sono rari testi di riferimento,
vale a dire quella messe di manualetti per crescere i figli che hanno sostituito l’esperienza delle nonne e che non esistono quando si deve educare un bambino con
disabilità.

– La stabilità della coppia,
non sempre le coppie sono preparate ad affrontare le rinunce che comporta la vita a
due, l’accoglienza dei figli ecc. La nascita di figli con disabilità apre la prospettiva di
una vita che in nulla assomiglia a quella sognata, pensata, pianificata ci si trova, nella
solitudine, in assenza di qualsiasi supporto a ricostruire sé stessi e, con scarse
probabilità di successo, il rapporto di coppia.
Questa disamina potrebbe proseguire toccando tanti altri aspetti dell’essere famiglia;
anche nelle famiglie numerose nascono figli con disabilità, molte famiglie hanno in
affidamento ragazzi disabili, non sono una rarità neppure le famiglie che li hanno
adottati.
Queste considerazioni vogliono introdurre una riflessione: le politiche per superare la
disabilità, nel nostro sistema sociale non vengono affrontate nella loro dimensione
familiare, ma quasi esclusivamente sul versante dei pur sacrosanti diritti individuali.
Questo approccio incide pesantemente sulle possibilità di riabilitazione e di recupero
del figlio con disabilità. Le opportunità negate alla famiglia sono, alla fine, diritti
negati alla persona con disabilità.

 

Dopo di noi
La famiglia andrebbe presa in carico fino alla gestione del transito, del figlio
divenuto adulto, verso una vita indipendente dalla famiglia evitando i traumi e le
tragedie di genitori anziani gravati dai problemi dell'età che si trovano ad assistere
figli adulti, nell'incertezza di quel dopo di noi per il quale la recente legge 112/16
offre alcuni strumenti, ma non soluzioni solidaristiche e universalistiche messe a
“sistema”.
Molte famiglie che si prendono cura di figli con grave disabilità intellettiva e
relazionale, che non hanno la forza economica, la competenza tecnica o vivono in
aree arretrate o “periferiche” del Paese, e sono la maggioranza, auspicano che lo Stato
attraverso, strumenti appropriati, es. fondazioni, assuma la regia di un “sistema” che
abbia due capisaldi: rispetto rigoroso della Convenzione ONU per i diritti delle
persone con disabilità( Legge 3 marzo 2009 n°18) ; diffusione capillare sul territorio
nazionale di soluzioni abitative ed assistenziali che replichino quanto più possibile
l’ambiente familiare.

Con quali mezzi economici?

– utilizzando tutte le previdenze già erogate dallo Stato (indennità di
accompagnamento pensione di invalidità, fondi specifici per il dopo di noi… pensioni
di reversibilità, di cui sono beneficiarie molte persone con disabilità.

– La legge 112/16 offre poi strumenti che consentono di finalizzare risorse rese
disponibili dai familiari (si dovrebbe comunque sempre accertare che non venga lesa
la quota legittima spettante alla persona con disabilità). Queste risorse, attraverso le
garanzie degli strumenti di cui alla legge 112, potrebbero affrontare efficacemente un
problema drammatico ma non insolubile.

– Sarebbe importante valutare l’applicabilità di strumenti giuridici che “favoriscano”
la destinazione dei beni residui, dopo il decesso del beneficiario, a favore
dell’“organizzazione” che gestisce il “sistema”; questi meccanismi potrebbero
concretamente portare alla sua autosostenibilità.

– Va considerato anche che la diffusione capillare nei territori, oltre a consentire alle
persone con disabilità di non essere sradicata dal proprio ambiente, favorirebbe,
l’attivarsi di quei preziosi fenomeni di solidarietà che ancora animano molte
comunità: un modello che ha nella storia delle istituzioni solidaristiche e benefiche
una antica e consolidata tradizione.

Il FORUM potrebbe intestarsi questa battaglia che ha necessità, nei suoi molteplici e
complessi aspetti, di essere verificata e“tradotta” da un piccolo pool di specialisti.

 

G. Trinchieri

“Passando vide un uomo cieco dalla
nascita e i suoi discepoli lo
interrogarono: «Rabbì, chi ha peccato,
lui o i suoi genitori, perché egli nascesse
cieco?».
Rispose Gesù: «Né lui ha peccato né i
suoi genitori, ma è così perché si
manifestassero in lui le opere di Dio.»

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