In several national, regional and political parties’ documents, it is clear how the main objective is to avoid institutionalization while supporting home care for dependents, i.e. not self-sufficient, (elderly and/or disabled).
This was Hervé’s circumstance.
What is hidden behind all this proclamation, made of big words that we all share?
Behind the idea of home care for dependents, there is mainly the figure of family caregivers.
Who are the caregivers?
Those individuals, mostly family members and women, who bear all the burden of providing free home care to not-self sufficient people.
And what does the State do for these caregivers? To answer this question, I cannot avoid quoting one of Fabrizio De André’s most popular songs, Don Raffaé. Yes, because for these people the government “is dismayed, is indignant, it makes a pledge, then it throws in the towel with great dignity” (“si costerna, s’indigna, s’impegna e poi getta la spugna con gran dignità”). That is, the figure of caregiver has no juridical recognition whatsoever by the State.
Concerning the caregiver issue, thanks to the work of the “Associazione Coordinamento Nazionale Famiglie di Disabili Gravi e Gravissimi”, the responsibility has been assigned to the Petition Committee of the European Parliament and the United Nations’s Committee on the Rights of Persons with Disabilities (the petition disclosed by Maria Simona Bellini, which collected 31,866 signatures, is available HERE). We will soon conduct a deeper analysis of the work done by these two Committees, offering a comment of the official documents. However, to date both these bodies are doing whatever is in their hands: that is, condemn Italy for the lack of recognition of the role of caregivers.
Currently, the Italian Parliament is discussing a new law to formally recognize the situation of caregivers, whom have been asking for #unaleggesubito (#alawnow). Caregivers will then be defined as volunteer care providers. Because voluntarily (and free of charge) they are giving up their lives to take care of someone who is not self-sufficient.
We sympathize with them because we believe it is ridiculous to segregate someone in their own home in order to provide home care.
We have read the law proposal and we will provide a comment in the coming days.
Today, we would like to analyze with you how you become a caregiver in Italy and whether it is really a voluntary choice.
In order to provide an answer, we retrace part of Hervé’s story.
When Hervé left the hospital, we were given all the necessary tools for artificial nourishment, the equipment to guarantee his safety and some weekly hours of physical and speech therapy.
According to the institutions in charge, the homecare project did not include professional assistance, as, in other similar situations of kids with severe disabilities, the assistance was always provided by the mother, together with the other family members, who were either using work permits (until depletion) if employees or giving up work if self-employed. Often, this is how you become a caregiver in Italy. “Voluntarily”, you give up everything because, although laws and policies support home care, the latter is almost always and mainly provided by someone giving up his life.
Translation: Federica Malfa