DISABILITIES, TECHNOLOGIES AND RIGHTS
Today I am in a special place, in the place of good intentions, where we meet to seek together solutions to the problems of our country and its inhabitants. It is a great honor to be able to speak here in the hope that even a small experience can contribute to the great project of the common good.
For this I want to thank Senator Lavinia Mennuni, who wanted to listen to me and support me with generosity and great competence. Let me also express the hope that such a sensitive issue can find a solution in the broadest and most transversal discussion and comparison possible.
The disability resides in society and not in the person. This is the reflection from which I always start when I start my speech. And for this reason solidarity and sharing, feelings that are important for everyone, take on fundamental importance for a person with disabilities throughout their existence.
Our country ratified the United Nations Convention on the Rights of Persons with Disabilities in 2009. However, even today, both in politics and in public opinion, the concept remains that people who have any limitation go before anything else protected and cared for, cared for and assisted, rather than valued and supported in their aptitudes and abilities.
And still today, the right to self-determination and inclusion enshrined in the United Nations Convention on the Rights of Persons with Disabilities is still not fully recognized and adequately supported.
Data on income inequality, wealth inequality, access to basic services and economic and social inequalities in general, still today, make this perception irrefutable in the common sense.
It is a fact, still today, that some rare diseases are not included in the civil disability tables despite the fact that they are instead included among the pathologies that have the exemption from participation in the cost of related specialist outpatient services.
Even today, those who live with a disability are often an isolated person, not integrated at a social level, who has to fight daily to assert minimum rights.
Even today, when those who live with a disability suffer discrimination, they tend to withdraw further, distrusted of the social and judicial system. And the new isolation predisposes even more to discrimination: the circle often closes in silence. In this sense, prevention becomes fundamental, which passes (only) through education, respect and recognition of rights, work with young people and in schools, in public opinion and civil society, in all places where it becomes community and social aggregation.
For people with disabilities and their families to overcome the multiple criticalities and break down all types of barriers, today, a Law on the equation of life accidents with accidents at work is urgently needed, adequately financed, which sanctions and supports the right to life independent.
– A bill that aims, finally, to affirm the right of Citizenship.
– A Proposal of Law which intends to implement articles 2, 3, 16 and 38 of the Constitution and Law n. 18 of 3 March 2009, in order to recognize (Art. 1) to people with disabilities, regardless of the cause, the right to take advantage of the most effective treatments and the best technologies existing on the market, provided by the National Health Service.
– Finally, which wants to update the tariff nomenclator (art. 2) without fail once a year, before the approval of the finance law. The update will have to provide for the use of the best technologies available and – at least with regard to the services and aids necessary to deal with the pathologies and needs of particular relevance – specific methods of delivery and supply which allow, for each beneficiary, due to the pathology of which he is the bearer, to take advantage of the services and aids most suited to his particular needs, in order to allow him the highest possible level of autonomy. The aforementioned methods, in particular, must guarantee that, for the purchase and supply of the services and aids listed in the Tariff Nomenclator, intended to deal with the most severe disabilities and the most delicate and complex needs, recourse to the tender is excluded. ‘contract.
– In order to ensure a more effective identification system of the services and devices that can be supplied, (Article 3), the establishment, at the Ministry of Health, of the “Commission for the registration of aids and prostheses” is envisaged with the task of evaluating and approving applications for inclusion of models in the repertoire of prosthetic and orthotic aids payable by the National Health Service.
– (Article 4). The commission referred to in art. 3 is made up of six members. Its members are by right the Director General of the Italian Medicines Agency and the President of the Istituto Superiore di Sanità. The non-legislative members remain in office for three years, renewable consecutively only once. The non-statutory members are chosen among people with proven professionalism and at least five years of experience in the sector of the methodology for determining the price of the aids and services referred to in art. 1, health economics as well as health care organization and health law experts.
Finally, the Government is delegated to issue special decrees which will regulate the procedures for appointing the commissioners and the functioning of the commission.
I would like to conclude my speech by sharing a reflection with all of you: Disability represents an obstacle that limits the freedom and equality of the people who live with it, preventing the full development of the personality. So it becomes necessary to point out that it is one of those obstacles that cannot be easily removed. A permanent commitment is needed which cannot be only that of the Legislator, but must belong to all the social formations in which the personality of those living with a disability takes place. That is to say that the commitment of Parliament, that of the Government, that of the school, that of the Municipalities, that of the employers becomes necessary. Everyone must contribute, according to their possibilities, to removing or at least reducing that permanent obstacle which is disability.