by Maria Giovanna Faiella
According to a study, in the last year one in five families has had difficulty buying food, one in three has had difficulty with medical expenses, but one in six families does not receive support from institutions. The process of implementing decrees on civil disability review and individual life project has begun
Having access to health, education, work, transport, moving without obstacles, participating in social life, having a life as autonomous and independent as possible, like other citizens. These are the rights of people with disabilities which are still too often disregarded even in our country, although United Nations Convention on the Rights of Persons with Disabilities (dal 2009 law of the State in Italy) establishes the right of every person, regardless of their functioning profile, to live in the various life contexts in conditions of equal opportunities with others, receiving the right supports and supports.
The opportunity to shine a spotlight on too many barriers, including cultural ones, which do not allow those with disabilities full inclusion in society is the International Day of People with Disabilities, which occurs on 3 December, proclaimed by the UN assembly in 1992. The theme chosen this year is United in action to protect and achieve the Sustainable Development Goals for, with and by people with disabilities. First and foremost: leave no one behind.
People with disabilities in the world and in Italy
According to the World Health Organization (WHO), there are approximately one billion 300 thousand people with disabilities, 16 percent of the global population.
And in Italy? Based on Istat data, in 2021 there were over 3 million people with serious limitations in their usual activities, that is, not able to carry out daily activities such as, for example, washing and dressing themselves, doing the shopping, preparing meals. , take the medicines. They have an average age of 67.3 years; in many cases they live alone, without the support of dedicated services, so families have to make up for the shortcomings of national and local institutions.
Approximately nine million 800 thousand, then, according to Istat data, are compatriots who have minor limitations (average age: 61.2 years).
Poor families due to disability: more social and health assistance
According to a study on the link between the condition of disability and economic and cultural impoverishment, conducted by CBM Italia (a humanitarian organization involved in the treatment and prevention of blindness in the world) with the Zancan Foundation, if within the family unit there is a person with a disability , in almost 9 out of 10 cases it is difficult to make ends meet; almost one in three families had no money in the last year for medical expenses (visits and medicines); 62 percent of those interviewed were unable to face an unexpected expense of 500 euros; one in five families had difficulty buying the food needed to support the family; more than four out of ten families have outstanding bills to pay.
According to the study, it happens that one in six families does not receive any support from institutions. Furthermore, one in four families cannot count on an informal network made up of friends, non-cohabiting relatives or volunteers. Yet among the aid requested, in 9 out of 10 cases it is not economic contributions but services aimed at both people with disabilities and their families, capable of promoting humanized interventions for overall care, in particular greater socio-health assistance is requested (39% ) and social (37%).
The message of the day: United to leave no one behind
Halfway towards the 2030 Agenda, people with disabilities continue to face systemic discrimination and barriers that limit their meaningful inclusion in all areas of society – recalls the Secretary General of the United Nations Antnio Guterres, on the occasion of the world day -. Truly sustainable development for people with disabilities requires particular attention to their needs and rights – underlines Guterres -. It means ensuring that people with disabilities are present at every decision-making table, in line with the Convention on the Rights of Persons with Disabilities.
Life with obstacles
It also happens in Italy that people with disabilities too often have to face physical and sensory barriers present almost everywhere, from schools to public transport; but also having to deal with prejudices and discrimination in the world of work (they are considered “less productive”) despite a law which, in theory, should favor their inclusion (n. 68/99), in addition to the obstacles that are encountered in many cases if one decides, for example, to go to a restaurant, concerts, cinema, museums or to practice a sport. Not to mention the language that discriminates, with terms still used such as differently abled, handicapped, disabled, instead of the correct definition indicated by the UN Convention, i.e. people with disabilities.
Intellectual disability, the stigma is still strong
The stigma affects those with an intellectual disability even more. Roberto Speziale, national president of Anffas, the national association of families of people with intellectual and/or relational disabilities, says: In recent years there have been many steps forward, especially at a cultural level, with regards to the self-representation and self-determination of people with disabled. Unfortunately, despite all the progress, there is still a need for a strong change in policies, practices and services affecting citizens with intellectual disabilities and neurodevelopmental disorders so that they are truly enabled to participate on an equal basis with all the others .
Deafblind community: Don’t lose sight of us
On the occasion of the day, the Fondazione Lega del Filo d’Oro onlus draws attention to the need to guarantee adequate responses to the specific needs of people who cannot see or hear. There are over 360 thousand people with deafblindness and multiple psychosensory impairments in Italy, often invisible and forced into isolation. Hence the request to the institutions to continue the process for the revision and full application of the Law 107/2010 (recognizes deafblindness as a unique and specific disability, ed.). Don’t lose sight of us, learn to really look at us and listen to us – the appeal of Francesco Mercurio, president of the Committee of deafblind people of the Lega del Filo d’Oro -. We need more interpreters to support us in daily activities, more technological aids that facilitate our autonomy and someone who teaches us how to use them, to experience inclusive opportunities that allow us to feel like participants in the society in which we live. Adds Daniele Orlandini, president of the League’s Family Committee: it is necessary to establish a network of services in the area that supports family members to guarantee essential educational and health services and support the social inclusion of our children.
Enabling law on disability: what will change?
In 2021, law no. came into force. 227/2021 Delegation to the Government regarding disability, in implementation of Mission 5 Inclusion and Cohesion of the National Recovery and Resilience Plan (PNRR). The regulatory intervention responds to the need to fully implement the principles of the UN Convention on the rights of people with disabilities, starting from the definition of the condition of individual disability and interaction with the environment. To give concrete implementation to the Enabling Law, the Legislative Decrees must be approved. The “heart” of the Reform are the Decrees – presented on 3 November to the Council of Ministers and to be approved by June 2024 – which concern the simplification of existing checks for the recognition ofcivil invaliddell’handicap (Law 104) and disability for work purposes, in addition to the different multidimensional assessment of disability for the realization of an individual, personalized and participatory life project, within which supports can be identified and coordinated along the life path.
In Milan on 2 December the Don Gnocchi Foundation is organizing an event open to citizens, Confine. Paths and views”, to allow those who wish to delve deeper into some aspects of the daily life of those with disabilities and experiment with the new tools offered by technology to overcome some barriers, for example ordering a drink at the bar with augmented reality, visiting a photography exhibition, attend a theater performance.
In Rome on 5 December at 4pm, the film “HAMLETO my brother” will be screened in the MediCinema room of the Gemelli Polyclinic, in the presence of the director and screenwriter Francesco Giuffr (who also works with the Teatro Patologico of Rome) and the four actors with disabilities protagonists of the film together with other famous actors such as Claudia Gerini, Vincenzo Salemme, Francesco Paolantoni, Margerita Buy and Nino Frassica. The special screening was born from a collaboration between MediCinema and the complex operational unit of Medical Genetics of the Fondazione Policlinico Universitario A. Gemelli IRCCS, on the initiative of Professor Pietro Chiurazzi who, having worked for years with these realities and knowing the children, reported to MediCinema the project.
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December 2, 2023 (modified December 2, 2023 | 6:27 pm)
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