“Today’s new course on disability. Two years for the turnaround, and then a consolidated Act”

Avvenire, 7 Feb. 2023, pp. 1 and 13.

The Minister for Disabilities Alessandra Locatelli repeats it with conviction at every conference or meeting on her tour along the Italian boot since the day she took office: 'Italy is becoming a more inclusive country'. Yet some data draw a somewhat different picture: alomst half of the more than 3 million people in our country who live with a severe form of disability, are unable to complete an education path, 40% do not participate in training and do not work, 32% are at risk of poverty. And for everyone, getting on a train, or on a bus in a big city, is often a matter of luck.

Minister, are you being optimistic or do you really see signs of a turnaround?

Clearly there is still a lot to be done: visiting the territories and meeting local institutions, the world of associations and families is important in order to listen and understand their needs - which are quite diverse from the point of view of the organisation of services and assistance – as well as to learn about the valuable projects that they are able to implement. I am interested in encouraging the institutions to work with all these entities, because collaboration acts as a multplier of results. Many Regions or local authorities already work in this way. We live in a peculiar time from a historical, social and economic perspecitve, very difficult in some ways, but at the same time one that offers us a great opportunity: the funds of the NRRP [National Recovery and Resilience Plan], the framework law [for the reform of disabilties] to be implemented, and many innovative projects that look to the future. And then there is a new way to look at disability: the time when the person with disabilities was someone for whom a space must be 'carved out' is over. Now all the people are at the centre, with their skills and talents that must be enhanced for the good of the community, contributing to the country’s growth. If we are able to seize these opportunities, if we know how to accompany this new vision, we will be able to bring about a revolution in the field of disability.

Let us go right into the merits of the framework law on disability reform. What is the timeframe and what are the implementation pillars of the law?

The law was passed last year and my task is to implement five decrees by the end of 2024. The first one establishes a National Guarantor, the second facilitates accessibility in the public administration, and the third establishes the procedures for determining the so-called essential levels of social services [LEPS in the Italian acromym]. Then there are the two revolutionary aspects: The assessment for disability, which has so far been carried out using the method of percentages and tables. There is here a radical change of perspective, for which we will immediately set up a working group; and finally, the implementing decree for the life project, that will help us determine the actual needs of the person.

Yet the untied knot of caregivers remains...

We want to build a single measure that is agreed upon by all the relevant ministries and that responds to all needs, i.e. both the caregiver of non-self-sufficient elderly persons and the caregiver of persons with disabilities, with a special focus on cohabitant family caregivers.

Family carers are loving and caring persons, who do not wish to be replaced but rather to be protected and supported in their task. Many people I talk to ask me to imagine respite pathways that can help them take a break every now and then to recharge, and greater possibilities to reconcile their task and their life through specific measures and protection.

The recent report of the Court of Auditors on 'after us' [the programme on support to persons with for people with serious disabilities without family support] outraged families and associations: half of the funds earmarked for the implementation of the autonomy projects were not been spent by the Regions and the actual beneficiaries were just 8,424, reaching less than 10% of the minimum threshold of the potential recipients, estimated at 100-150,000 persons in the technical report to the law. Why is this happening?

Law 112 of 2016 on 'After Us' was strategic and gave impetus to the approach based on the life project, which is now central in the NRRP and for the EU, as well as in the Italian framework law. This regulation, however, has not been fully understood, perhaps because in some aspects it is indeed too complex. It is my intention to set up a round table with the associations and stakeholders soon, to elaborate a proposal for improving the rule and making it easier to apply. Thew dialogue with the Regions is also required to understand what is not working.

When we talk about ‘After Us’, we cannot but also talk about ‘During Us’, an issue of fundamental importance for families and another important topic for discussion at the institutional table.

But isn't there a risk that the good ones will do better and better, while the less good ones will be left in the lurch?

To fully implement this law, it is essential to design a path with families and associations. Of course, it is a laborious task, because it is not about distributing resources according to pre-established criteria, but about building a life path that is shared with the person and the family, a quality life path that takes into account the social aspects, the health aspects and the social-health ones, but above all a path that can be implemented with a project budget that requires recombining resources.

Work inclusion also still does not take off.

And here, too, a law, Law 68 of 1999, needs to be updated. Over time we have seen that these paths are successful, especially in companies that have created dedicated roles for support and accompaniment. Above all, however, in recent years, the third sector, associations and cooperatives have been able to devise innovative paths: I am thinking of food production, paths in the field of agriculture and commercial businesses. There have also been job placement activities making use of technology and digitalisation, such as digital achives of documents entrusted to associations that provide training for people with autism spectrum disorders.

So many laws, so many working groups to convene, so many changes to make...

At the end of 2024, when the implementation of the framework law [on disability reform] will be complete, a consolidated Act (Testo Unico) on disability will be needed to put the regulations and funds in order, because over time they have been added in a fragmentary way.

In the meantime, everything is still difficult for a disabled person: travelling by train, entering a museum, going to a concert.

The UN Convention on the Rights of Persons with Disabilities was ratified by Italy in 2009: it enshrines the principle of universal accessibility to services, everyone must be able to do everything and everywhere. In our country, unfortunately, we continue to 'adapt': facilities, means of transport, access to exhibitions and concerts. We need a change of pace, which can only come from a change of perspective: understanding disability not as an issue for the persons who live with it or of their families, but as a responsibility to be shared by the whole community. We are working in this direction, but until facilities, means of transport, exhibitions and concerts are planned for all, and until there is a qualitative leap in the full implementation of the norms and in the guarantee of the rights enshrined in the UN Convention, someone is needed to make the voice of people, families and associations heard. I hope that soon this pathway will be completed and a Ministry for Disabilities will no longer be necessary.

Is there an encounter, among the many you had, that particularly impressed you?

Every time I visit a local organisation or meet associations, I am moved by the great work they do and the passion and commitment they put into it. Especially so when I see young people and the most fragile people express themselves in recreational activities, sports, work. In those moments I see the great value of the third sector and of families, and I am convinced that we must never forget that the person is one and that he or she needs care and assistance but also affection, relationships and social activities. With Marta Russo, a person I met recently, we talked about many issues, and most notably about the scholarships that until now were combined with the disability pension so that the former excluded the latter. I worked with the relevant offices to amend this rule and we managed to include a special provision in the budget law [for 2023], so now things have changed.

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