Adnkronos Rome, May 16 (Adnkronos Salute) – "No authority, no matter how competent and independent, can address alone the complexity of the challenges that ALS", amyotrophic lateral sclerosis "poses every day. Especially at a time like this when regulations are changing". We can therefore "address this fundamental issue only through authentic, structured and continuous collaboration.
So create a network between the Guarantor Authority, public and private institutions and associations, starting with Aisla, obviously. Only in this way can we generate concrete and measurable changes in people's lives". This was stated by Antonio Pelagatti, Guarantor for Disability, speaking remotely in Jesi (Ancona) on the first day of the National Conference of the Italian Association of Amyotrophic Lateral Sclerosis.
"The Guarantor is an institution created not only to monitor rights, but also to promote rights. There are many forms of collaboration - Pelagatti observes - but I am aware that only dialogue with the third sector, those who deal with ALS, will guide its development. The new Third Sector Code identifies intervention models through co-programming and co-designing in networks that must be structured and stable to receive, systematize and transmit reports of recurring critical issues - social, administrative, health - that emerge in different territories". On the "dozens, hundreds of reports of all types" that the Guarantor receives every day, "our task - he clarifies - is to examine them, listen to them and activate a collaboration for a concrete action capable of identifying, overall, for example, the most urgent problems that families and people with ALS have, transforming the most relevant and common reports into institutional interventions, so as to concretely improve the care pathways in public policies".
Together we can do many things. "Let's just think about technological innovation, updating assistive technology devices and therefore constantly updating the Lea price list - Pelagatti explains - What matters is collaborating to transform reports into system interventions, to actively involve public and private bodies that offer public services in removing obstacles. In practice - he underlines - making rights enforceable throughout the national territory, overcoming the profound territorial inequalities that today hinder full citizenship of people with disabilities, with severe disabilities in particular, and ALS". This is "a civil, moral, human responsibility. A commitment that arises from a mission shared with the entire network, with all those who want to work together to guarantee people with ALS not only adequate care, but recognized rights, current tools and a life full of dignity".