A LAW NOT TO LEAVE DISABLED PEOPLE ALONE An interview with the deputy of the Democratic Party Ileana Argentin, one of the first signatories of the bill "After Us"

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At a time of social crisis, when many people have raised criticisms and expressed fear on care and attention ethical, legal and political, for the people most vulnerable, fragile and needy representants of the national and human communities, Italy lights a candle of hope thanks to a law defined by many as “good and right”, which was approved on Tuesday, June 14, the Chamber of Deputies, with 312 votes in favor, 64 against, and 26 abstentions. It is the first one to have an articulate approach to the protection of the ”best interests” of severely disabled people who lack autonomy and a family to help them, after the relatives in charge of them pass away. The unified text “Provisions for the care of people with severe disabilities without family support” is better known by the meaningful name of the bill “After Us.” A legislative “caress” that comforts many people after the many slaps received from the violation of too many of their rights.

In 10 articles, the regulation governs assistance, care, and protection measures for people with severe disabilities who lack family support, after both of their parents pass away, or because they are not able to provide adequate help (in this case, “Along with us”, the family), with the consent of people with disabilities and stakeholders. The implementing decree will have to intervene on the basic levels of welfare benefits (LEP).

Articles 3 and 4 provide for a fund in the Ministry of Labor and Social Policy, of about 176 million euros in the three years from 2016 to 2018, to fund “programs for encouraging de-institutionalization, support at home, providing care in homes or apartment-groups that imitate the housing and relational conditions of a family home and takes into account the best opportunities offered by the new technologies, in order to prevent the isolation of persons with severe disabilities”. There will be interventions aiming at temporary permanence in institutions “to deal with any emergency situations, while respecting the will of the person with severe disabilities” and also through “innovative residential interventions”, such as co-housing and “family groups”, to share living expenses in the same dwelling. Art. 5 provides tax deductions for insurance premiums on death risks for the protection of people with ascertained severe disabilities. Art. 6 exempts from taxes the transfers of assets made through donation, trusts, or at no cost, provided that their “exclusive purpose” is social inclusion, the care and assistance for individuals with severe disabilities, and therefore, special funds with allocation constraints are created.

Paola Ricci Sindoni, national Director of “Science and Life” says: “It is a good sign of civilization and active solidarity that the Parliament addresses the whole social community today and especially many people with disabilities, who cannot rely on the help of family members and live every day the anguish and difficulty of their own maintenance.” We must recognize – said the professor of philosophy of the University of Messina – the positive elements that can immediately help improve the quality of life of persons with severe disabilities and without family support, especially when parents pass away and disabled people risk being left to their own devices.” And this is “a positive example of constructive and supportive use of public resources, in a logic of subsidiarity.”

In The online petition “Change.org”, consent to this bill had gathered 88,000 signatures. Among the promoters of this law, pursuant to Articles 2, 3, 30, 32 and 38 of the Constitutional Charter and to the UN Convention on the Rights of Persons with Disabilities in Italy, in 2009, the Foundation “After us” in Bologna, a non-profit organization founded in 2002 to deal with people with intellectual disabilities and Down syndrome in particular, and to answer to the biggest concern of their parents: “Who will take care of our disabled child when we pass away?” This bill fills a legal void concerning one of the tasks that a State worth being defined as civil must fulfill: to provide assistance to the most vulnerable citizens. Thus, as stated by the deputy of the Democratic Party Edoardo Patriarca, “this hole in the Welfare has been repaired” and “Italy is proudly adjusting to civilized countries.” But, perhaps, more might have been done and still can be done.

In Terris talked with the deputy of the Democratic Party Ileana Argentin, one of the first signatories of one of the bills that became part of the unified text, passing in first reading in the House on February 4, 2016, then modified in the Senate on 26 May, and now finally approved in the House. Argentin is a lawyer and an experienced politician, she knows disability-related difficulties from direct experience in the field, having obtained the mandate for disability policies and the Mental Health of the former mayor of Rome, Walter Veltroni, and holding the position of president of the Lazio Association for Disabled People. In addition to all this, there is also her personal story: she is affected by spinal muscular atrophy.

Hon. Argentin, we needed this law, which voluntary and family members’ organizations had been asking for years. Are you satisfied with this result?

“Very much. I would even say it makes me happy. Also because of the cultural battle we won with this law. It is easy to say: ‘Poor disabled people’. This law is action, not words. I thank this government, especially Prime Minister Renzi, for showing attention and strong sensitivity towards these issues. Neiter Prodi or Berlusconi did so, despite it was needed since long ago and everyone knew it. I am glad to have seen many parents with disabled children who are satisfied. I have received hundreds of phone calls. He have put a smile on the face of so many people.”

Do you think that we might have done more in support of the people with severe disabilities who are in a particularly disadvantaged economic condition?

“We might have, and maybe still can do more. We have started, as no one had done it before. We made a great effort to put different visions together and give answers to the needs of people with disabilities and to many parents who make sacrifices to support a difficult, hard, and heavy life. Those who say it is a law for the rich, talk nonsense. For example, those who do not have a house of their own can be hosted by those who have one, in a ‘family group'”.

Some people, like Previte, president of “Christians for Service”, the Catholic movement connected to Father Guanella’s Opera, said that “the fund is not enough”…

“Almost 180 million euros were allocated in three years. At the moment, giving more than that would mean depriving other people of resources they need too, such as homeless people or earthquake victims. Something more can be done in the implementation phase, even on a local level, and there will certainly be subsidiary resources available, both private and of the organizations, that many parents of disabled children are willing to give.”

Which norm of this law makes you feel especially happy and proud?

“In general, the cultural change in terms of disability that this bill proposes in Article 1, for instance, which deal with de-institutionalization. In legal and hopefully civilized language, we do not refer to them as ‘institutions’ but simply as ‘family groups’. What makes me feel especially happy and proud is that thanks to this law, many parents and family members will be finally able to approach death with serenity. With this law, we overcome the idea that disability is physical difficulty that comes across architectural barriers. This law is a social, ethical, and moral gift. We have destroyed a cultural wall.”

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