Disability day, between denied rights and independent life desire

Disability numbers

It is estimated that there are 4,360,000 disabled people in our country. In particular, according to an ISTAT study in Italy, about 189 thousand people suffer from problems related to both sight and hearing. These are people who in addition to living constantly immersed in darkness and silence, are forced to a condition of isolation because often sensory disabilities are also added other motor, intellectual or neurological disabilities. For almost all deaf-blind people (in 86.7% of cases) leaving home is a problem that can sometimes be insurmountable, pushing them towards an unintended condition of complete isolation, even emotional.

Few services and scarce resources

But the services dedicated to them are scarce and the resources made available are too few, both locally and nationally. In this scenario, families are often left to themselves and unfortunately they are forced to come to terms with increasingly high costs of care and very long waiting lists. In 2016, approximately € 28 billion was spent, 5.8% of total social protection expenditure. Per capita expenditure, with the same purchasing power, in our country is 457 euros per year, which places our country in the middle of the ranking of EU-28 countries, after those in Northern Europe. In particular, the Italian welfare model is characterized by a typology of interventions based on economic transfers rather than on services: out of 28 billion of expenditure almost 27 billion are monetary transfers, equal to 96.4% of total expenditure. Moreover, according to the latest estimates, more than 4 million Italians give up visits or specialized assessments for economic reasons and, in particular, 5.2% of Italian families declare that they have scarce or insufficient financial resources to face them, compared to 1.9% of families who declare that they have adequate resources.

Update aids and prostheses two years late

Among the various problems and delays that make life easier for the disabled, there is the question of aids and prostheses: "After years of waiting for the updating of the LEA and the Tariff Nomenclator – declare Filomena Gallo, secretary Luca Coscioni Association – the review took place in 2017, but these services are provided incorrectly. The Ministry did not carry out the review of the deed that in 2017 updates the LEA and Nomenclatore aids and prostheses in which the individual needs of the different disabilities are not taken into account and consequently regions and principals, which cannot proceed correctly – continues Gallo – . The law provides for an annual update of the LEA and Nomenclatore aids and prostheses, and two years have passed since the last revision, we ask the Minister Roberto Speranza, how much longer will the disabled have to wait to see acknowledged requests that those in a state of fragility can no longer see without answers? ".

The situation of the deaf-blind

Although the European Parliament has invited Member States to recognize specific rights and protections for deaf-blind people, through the approval of adequate legislation, in Italy the law 107/2010 that recognizes deafblindness as a unique disability has not yet been fully implemented. specific. There are also numerous people with disabilities who are also awaiting the recognition of Lis (Italian Sign Language) and Lis Tattile which would allow them to break down communication barriers. "On the occasion of this important day we want to reiterate how the right to inclusion in society of people with disabilities should be a priority for everyone", – declared the President of the Lega del Filo d'Oro Rossano Bartoli. The recognition of the Lis and of the Lis Tattile would allow a deafblind person to benefit from an interpreter whom he can use for example in emergency conditions, as in an emergency room. This would be a fundamental support to manage one's life ".

The initiatives of the Lega del Filo d'Oro

To meet the needs and needs of families of people with disabilities, the Lega del Filo d'Oro has made available, in various Italian regions, venues and territorial services that are a reference point for families who risk feeling inadequate and alone in the daily management of children and can confront themselves with other families living in the same condition. The territorial team informs the local institutions of the presence on the territory of a deafblind person and his specific needs. Furthermore, it is the operators of the territorial services themselves who share and explain to family members, support teachers, social and home assistants and operators of local centers, how to put into practice the individual rehabilitation programs developed by the educators and specialists of the Lega del Filo d'Oro. Finally, they organize social, sporting and cultural activities dedicated to deaf-blind people to widen their reference world and get out of the isolation in which they risk living.

The #vadoaviveredasolo project

Also highlighting what works is also the Union for the Fight against Muscular Dystrophy which is today launching an awareness-raising project on the independent life of people with disabilities: #vadoaviveredasolo, a blog where people with neuromuscular disabilities and not only have a space to talk about work, study, family, projects, dreams, in the perspective of an independent life. The blog already collects some significant stories but the invitation of the Association is to contribute to the project to set up experiences that can be useful to all: "A single day is not enough to reflect on the theme of disability", he explains Marco Rasconi, national president of UILDM. "We want the critical issues, but above all the solutions that the associative world has built up over the past few years are a common heritage, to multiply the life opportunities of people with disabilities. Opportunities deriving from the advancement of medical research to work placement, from law to study and play until we reach what we believe is the synthesis of everything: the projects of "Independent life" which means facing the "during us" and the "after us". It means working on the daily life of the person with disabilities and not only on the emergency ". To send a contribution write to [email protected] or fill out the form at the link https://vadoaviveredasolo.uildm.org/index.php/e-la-tua-storia

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