This letter was published in the Messaggero Veneto, 19 February 2010.
For years my wife and I reflect, think and we are confronted with the institutions to cope with the problems of our son, to help them grow and to minimize the impact of disability in its quality of life. As a father and doctor, I would like to make some consideration. I firmly believe that we can not progress without a cultural leap that moves the heart of the problem of disability to the person. The Convention on the Rights of Persons with Disabilities (PCD) of the UN is the law in Italy (L18/09). The WHO introduced the ICF, rating scale of disability as resulting from the interaction between the person and his life situation. In actuality, however, often fought against the walls of indifference, ed'ignoranza presumption. Intellectual disability and relationships is more difficult to consider because it is not always clear how the physical and sometimes not easy to assess the degree of understanding of who does not respond within the time and manner considered normal, or who can not represent their needs. Often one gets the impression that there is inequality of treatment between the various Pcd For example, the Fund Regulation serious (Messenger 14 / 2) excludes from the recipients very serious people with disabilities from birth. For me, a retired surgeon, was easy to determine the severity. In the field of disability is more complex. At the same diagnosis two people develop different degrees of disability on the basis of support they enjoy, and if not well supported, can be superimposed psychiatric disorders that lower the quality of life of the person and his family and increase health problems and social costs. Now that the neurosciences have demonstrated the plasticity of the brain at all ages is ethically abhorrent not to intervene in an appropriate manner. In the regulations of the Fund for the possible independence using a rating scale that measures only the physical, therefore unsuitable for those with a disability who is otherwise excluded from the benefits. Is this discrimination? There are SKBF (daycare) that do not meet everyone's needs. And the others? How many? And for those who would need assistance lighter and less expensive, what are the deals? Maybe you just need more opportunities to socialize and promote autonomy social work aimed at a true inclusion in the community in which they live. What do you do for them? To address the problem if it goes dejectedly. It feels unheard, is a constant struggle. Rarely perceived the curiosity and interest in the institutions to seek solutions that come out of fees and better meet the real needs of people, you have to adapt to the services. And this is the face of individual projects and of all laws that exceed the optical compensation and promote the enforceability of rights of every person and non-discrimination. To my knowledge, there is a mapping of the needs of PCD and reliable data without adequate planning can be based on what? It is also difficult to ask and, from experience, I can say that after years of repeated negative responses is frustrating to ask again. Is more effective self-organize to promote growth and protect the rights of their children. Us to address the institutional weaknesses and offer alternatives to our son we have experienced a lot, but those who do not have the powers and means to address the institutions and settle for what they offer. Many associations defending the rights of PCD, often acting in a manner devoid of the cohesion and unity of purpose that would achieve better results. We should affirm the rights of all Pcd, each with its specific needs and his plan of life. I hope that those involved in these issues, primarily politicians, endeavor to ensure that there be a network of support and solidarity for all who can not leave from the resource of volunteers. This would allow anyone who has some disadvantages, of living a life of better quality and more autonomous.
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