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The budget law approved at the end of last year has increased the money allocated to the fund for policies for people with disabilities: from the 300 million euros foreseen for 2022, it has increased to 350 million per year until 2026, which are needed to finance many indispensable services also dedicated to the people who eventually assist them. However, for the government itself it is very difficult to understand if these funds are sufficient because in Italy it is not known how many people with disabilities actually are.
The lack of reliable data is a big problem that associations, foundations, experts and experts have been discussing for some time and which ISTAT, the national statistical institute, is struggling to remedy. One of the consequences of this deficiency is that all support and assistance policies, not exclusively health care, as well as specific funds for inclusion, access to work, education and sport or even the elimination of architectural barriers and the design of inclusive places were conceived and financed on the basis of estimates obtained from surveys, therefore approximate.
One of the main limitations of the data concerning people with disabilities is the very definition of disability. According to theInternational classification of functioning, disability and health (Icf), in fact, disability does not exclusively concern the presence of a physical or mental deficit. It is a concept taken from the 2006 United Nations (UN) Convention which shifted attention from individual conditions to the social context of the person with disabilities as a protagonist of relationships with environments and people. The convention explains that people with disabilities “have lasting physical, mental, intellectual or sensory impairments which in interaction with barriers of different nature can hinder their full and effective participation in society on an equal basis with others”.
Compared to the past, much more importance is therefore given to the social dimension of disability which, according to this well-established approach, can be considered a serious manifestation of a society’s inability to ensure equality for people with health problems.
According to the World Health Organization (WHO), 15 percent of the world population, at least one billion people, is disabled. This percentage is increasing mainly due to the aging of the population.
Even if making comparisons can be misleading, the latest estimate on the number of people with disabilities in Italy is quite far from the 15 percent estimated by the WHO. According to the platform Disability in figures carried out by ISTAT and relative to 2019, the people who suffer from serious limitations that prevent them from carrying out their usual activities are about 3 million and 100 thousand, equal to 5.2 percent of the population. Another data, also in this case very different from the previous ones, can be obtained from the disability pensions paid by INPS: in 2017, the latest update available, says that the invalidity pensions were 4.3 million.
The ISTAT estimate on the incidence of disability in Italy, which among other things is used by the government to plan policies and related funding, is the result of a general survey called “Aspects of daily life”. A sample of 20,000 families or 50,000 people are asked several questions, including this one: “Due to health problems, to what extent do you have limitations, which have lasted for at least six months, in the activities that people usually carry out?” There are three possible answers: severe limitations, minor limitations, no limitations.
According to the survey, the incidence of people with disabilities is highest in the islands, Sardinia and Sicily, with 6.5%, while the lowest value is in the North West, 4.5%. The regions in which the phenomenon is most widespread are Umbria and Sardinia, respectively 6.9% and 7.9% of the population. Campania, Lombardy and Trentino-Alto Adige, on the other hand, are the Regions with the lowest incidence: 4.4%, 4.1% and 3.8%.
The incidence is very high among elderly people: almost 1.5 million over seventy-five years old, that is more than 20% of the population in that age group, are in a condition of disability and one million of them are women. People with severe limitations have a higher average age than the rest of the population: 67.5 versus 39.3 years. 29% live alone, 27.4% with spouse, 16.2% with spouse and children, 7.4% with children and without spouse, about 9% with one or both parents, the remaining 11% live in other types of family. But as mentioned, these are estimates.
The most significant problem that explains the lack of reliable data is that until recently the INPS had not digitized the data relating to people with disabilities: in fact there was no archive with all the certifications issued by the medical commissions that deal with determine if a person needs financial support. Among other things, INPS managed to digitize them only starting from the certifications made after 2010: the impossibility of reconstructing the past with precision, and therefore understanding exactly the condition of people with a disability ascertained before 2010, makes these rather incomplete data. For this reason, ISTAT has so far had to resort to sample surveys.
A further obstacle is represented by the occasional nature of very important and never repeated investigations, such as the one relating to violence against women, in 2014, or the Labour Force Survey of 2011 or the EHSIS (European health and social integration survey) relating to health, of 2012. Without constantly updated data it is more complicated to understand the trends and the impact that policies, laws, reforms and interventions may have had on the many people affected by this issue.
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The need for more reliable data on people with disabilities is at the heart of a campaign promoted by the foundation FightTheStroke, which supports the cause of stroke and infantile cerebral palsy survivors. The foundation funded and published a digital platform, called DisabledData, with the aim of collecting all data relating to disability from various sources and making them available. The data was collected with the support of the onData association, which for years has supported the dissemination of data as a tool for civic participation, and the platform was designed by Sheldon.studio with an inclusive design, accessible to anyone.
Francesca Fedeli, president of the foundation FightTheStroke, explains that when they started working on this project it was immediately evident that there were many problems due to the difference between the various estimates. “We are talking about data behind which there is a very large, heterogeneous community of people, and which within it has different classifications, for example linked to motor or sensory disabilities, with very different needs,” says Fedeli. “Often families or individuals have no reference points because it is difficult to find experiences similar to one’s own. It is one of the reasons why our foundation was born. The poor perception of the situation is also a limit for the institutions. To think about effective policies and solutions it is important to do research, but without data it is difficult ».
All these problems are well known to ISTAT, which has been working for over twenty years to obtain more reliable data on people with disabilities. Alessandro Solipaca, ISTAT researcher and member of the national observatory on the condition of people with disabilities, a body of the Presidency of the Council of Ministers, explains that the current data are self-reported, that is, based on people’s responses to surveys, and that to have estimates more reliable, a more specific sampling than the current one would be needed.
This limit will be partially exceeded by a project that ISTAT has been working on for some time, namely a new disability register. “There will be different levels of in-depth analysis: through the digitized certifications by INPS it has been possible to identify how many people with health deficits, more appropriate statistical information will be available according to the criteria and rights provided for by the UN convention and investigations will also be planned ad hoc statistics on disability, ”says Solipaca. “We will improve the quality of information in general and also on individual areas of inclusion. The measures taken by the government must clearly identify the people to whom they are addressed: better data allows to promote better policies ».
The surveys promoted so far, together with the work of the associations, show that the tools and funding are often insufficient or ineffective. For example, the policies of access to work have been inspired by the principle of enhancing the skills of individuals, also with the aim of promoting dignity and the right to economic independence, however the employment levels of people with disabilities are still far beyond below the national average and often workers with disabilities are relegated to secondary jobs.
Even the interventions to favor the reconciliation between work and the care of a family member with disabilities have been ineffective, as evidenced by the working careers of the so-called caregiver, often less relevant than those of the rest of the population. This is a problem that affects women in particular.
Families continue to play an essential role around which institutions, from government to local authorities, have developed a series of support interventions. In perspective, however, the rarefaction of family and social networks risks undermining the sustainability of this model. In the survey entitled Know the world of disability, published by ISTAT, we read that statistical information can play an important role in designing and implementing a new welfare model and in this way counteracting the risk of exclusion and abandonment. More data and information should allow “not only to better understand the living conditions of people with disabilities in different areas – and the different severity of their limitations – but also to identify the various barriers that determine their disadvantages”.