Roberto Speziale: «Woe betide those who remain anchored to a past that no longer exists»

What is the role of the Third Sector – associations, cooperatives, management bodies – in the change designed by the disability reform and the legislative decree 62/2024? What challenges is it called to face? What must it change? What contribution can it make? The multi-voiced story continues to look inside the change underway, with its opportunities and the critical issues to be addressed. We talked about it with Roberto Speziale, national president of the National Association of Families and People with Intellectual Disabilities and Neurodevelopmental Disorders – Anffas, for whom the challenge is to « change and reset one's thinking as a new subject in a changed context . To not remain anchored to a past that no longer exists».

What is the role of the Third Sector and what challenges await it?

The Third Sector reform has already drawn a clear line between the past and the future. Everyone is called to adapt and respect what is now the norm, otherwise they will be left behind and no longer able to deal with what is a totally new context that does not allow for approximations : both the survival of those who are now the new subjects of the Third Sector and the lives of the many people and families who are followed by them are at stake. Aps, Ets, OdV, social enterprises... it is not just a matter of seeing their name changed but it is a matter of changing and resetting their thinking as a new subject in a changed context. The challenge is precisely this, not to remain anchored to a past that no longer exists, not to be found unprepared, to be constantly updated and ready to respond to new issues such as, for example, accreditation and agreement, the management of services that must converge in an inclusive transition, forgetting everything that was standardized and pre-established as also indicated by our Research/Action . For this reason, as Anffas we are carrying out a 360-degree updating process, which involves our realities: we have prepared a Quality and Self-Control Code with a related Manual , we have organised numerous events dedicated to management, we have currently activated an internal training called “Accademia Anffas”, and all this is contained in our Perugia Manifesto , where a strategic plan is outlined towards 2030, addressing issues related to economic resources, the assignment of services, market competition and the development of the reform of the Third Sector.

In your opinion, how does the Third Sector need to change?

It must change in many ways, starting from the new forms of organization, financing and provision of services, entering into these new mechanisms without being overwhelmed by them : it is not that simple. The reform in a certain sense has forced all the actors of the Third Sector to become aware of a new role to carry forward which however must not make us forget the origin of everything, that is the primary objective of building a more inclusive and participatory society . Let us not forget that the Third Sector has always worked for the creation of a truly inclusive welfare and contributes to identifying emerging needs often going to make up for the shortcomings and delays of the State . The challenge is to be able to become an active and co-project partner relating to the Public Administrations and go beyond the function of simple provision of services.

The Third Sector has always worked to create a truly inclusive welfare system. The challenge is to become an active and co-design partner by relating to Public Administrations and going beyond the function of simply providing services

Roberto Speziale, National President of Anffas

How are networks and closer comparisons between public bodies and the Third Sector being built in the territories?

Co-programming and co-designing are the key words. At this time, it is more necessary than ever that the two entities are able not only to communicate but above all to collaborate with a view to the well-being of the community. This is the goal we are aiming for through our “ Stati Generali sulle disabili intellettive e disabili del neurosviluppo” (General States on Intellectual Disabilities and Neurodevelopmental Disorders ), events that cross Italy to take stock of the issues and policies relating to intellectual disabilities and neurodevelopmental disorders. These events, which directly involve people with disabilities, family members, experts and institutions, are an opportunity for discussion to address the difficulties that still hinder the realization of the rights of people with intellectual disabilities and neurodevelopmental disorders; it is on these occasions that new relationships and new connections are built between the interested parties.

People with disabilities are the only true experts in their lives and they are the ones who can tell us with certainty what they need and what they want to achieve.

Roberto Speziale

How can we really listen to people with disabilities, so as to gather their needs and expectations and build the project on those and not on the existing service?

Listening and direct participation are fundamental. We will never tire of saying that the person is at the center of everything and that their desires and needs must come first. People with disabilities are the only true experts of their own lives and they are the ones who can tell us with certainty what they need and what they want to achieve . For this reason, their participation must be constant, at the center of the decision-making and project process. All this involves a continuous process of monitoring and evaluating the various services so as to guarantee a real response to their needs. Like everyone else, in fact, people with disabilities change over time and consequently the services aimed at them must also change with them and always respond fully to their needs.

What do you think about the portability of the project budget, which is so scary today? And what does it mean to innovate services starting now, even in the territories not involved in the experimentation and how to do it concretely?

With respect to the topic of the project budget, it is important to have a flexible approach, for example to continue to guarantee services even if the contexts change . Collaboration between the subjects involved in various capacities is important to have transparency in the management of the budget and monitor the consistency of the services offered. It is, in fact, now accepted that the project budget is an integral part of the individual project and cannot be the only resulting expense to be covered with spot financing now of one service now of another, but must be characterized as a large basket of resources, not only economic, to which the various administrations make these resources available , also to consider the activation of services not included in the canonical units of offer.

As regards the territories not yet involved in the experimentation, it is a matter of continuing to promote and spread a new culture of disability and all the principles of the reform. This means spreading awareness of the importance of co-design and co-programming, provided for by articles 55 and 56 of the Third Sector Code, and encouraging the exchange of experiences and good practices. Innovating now means starting to build territorial alliances, encouraging the sharing of resources and skills and immediately activating processes that allow the co-financing and co-realization of interventions, even in the absence of formal experimentation . Third Sector entities can play a fundamental role in this process, actively contributing, together with public administrations, to the construction of services that meet people's needs, within an integrated and sustainable vision.

Are you a Third Sector organization in one of the areas involved in the Progetto di Vita experiment? How are you thinking of changing the services in the context of the reform? How are you getting involved? Do you have a thought or an experience to share? Write to [email protected].

The cover photo refers to the Schizzati project by Anffas Macerata