Chronic illness According to the World Health Organization, chronic illness is "a health problem that requires treatment

over a period of several years or decades."

Specifically, chronic illness are defined by:

1. The presence of an organic cause, psychological or cognitive; 2. An age of several months; 3. The impact of disease on daily life: functional limitation, the activities, participation in social life; dependence vis--vis a drug, diet, medical technology, an appliance, personal assistance; need medical or paramedical care, psychological counseling, education and fitness.

As emphasized by the Directorate General for Health, this is indeed the existence in all its aspects is affected, and often disrupted by chronic illness: the social and professional life, but also the emotional and family life, even the very identity of the patient. conomic data

1. In UK, chronic illness affect 15 million people with more or less severely or 20% of the French population. 2. Major chronic diseases, millions of people in France are: 3. The number of people in ALD increased by 60% in 10 years and could increase by 20% by 2012 to 12 million. Cancer, with 1.6 million people already accounts for 20% of ALD. 4. Economically, the management of MC is a major challenge for our health insurance system. Thus, it is every year 80 billion euros are spent on care for ALD and concentrate nearly 65% of insurance reimbursements disease. According to projections by the CNAMTS, they should reach for the general scheme of 89 billion euros in 2011 (or 68.5%). Their evolution and their consequences remain largely dependent on patient access to information, to appropriate care, social innovations and new forms of solidarity. A quality management is clearly focused on the patient, not just the disease. Faced with this national and international bodies have taken up the issue and have implemented strategies and plans.

Chronic diseases in children

Under the term chronic illness, the study includes conditions such as asthma, but also obesity or the phenomena of hyperactivity with attention disorders . The results presented in JAMA are based on three cohorts of children, included in the survey when they were between two and eight years, and followed for six years. The first cohort was studied between 1988 and 1994, the second from 1994 to 2000 and the third from 2000 to 2006. Despite the temporal proximity between the three cohorts, the study revealed significant changes in the prevalence and intensity of a number of chronic diseases in children. On the one hand, it confirms the growth of the prevalence (number of cases in a population) of chronic diseases in children. This is a phenomenon already observed for thirty years.

But, conversely, chronic diseases of children are disappearing faster than before, which leads also to review their qualifications. The study attributes this to the natural effects of child development (in the image of childhood asthma, which often disappears with puberty), but also to advances in treatment (eg, in the case of childhood cancers) and variations in environmental factors. Specifically, the study suggests a "limited persistence of asthma", with a sharp increase in cases not sustainable. Similarly, obesity has changed considerably: only one third of cases observed at the beginning of the study were still at the end of it, the other children had left the field of obesity. But others, who were not at baseline, became obese during follow-up ... This applies equally to behavioural problems. Given these results, the authors of the study underline the need for good management of chronic diseases. They also recommend trying to better understand the reasons that lead some children to experience a remission, while others retain their long-term chronic illness.

Disability and chronic illness Currently 8% of the students because of a disability or chronic illness are impaired in their studies. Contact the Student Ulm is responsible for advising the management of students with disabilities (Claus Kaiser, 0731 Tel 50-23811, Mail to Mr. Kaiser ). For students with disabilities is the Student 2-Ulm, a suitable apartment, flat, and three low-barrier rooms. Each university has advisors for students with disabilities or chronic illnesses.

In the Federation of Student Unions, the German Student DSW, a central advisory and information center is established. Its mission of collecting, processing and dissemination of all information that can be filled up and carrying out the study with disabilities and chronic diseases of significance.
The child with disabilities or suffering from a chronic

Each application is considered with the greatest attention in each case. Some steps must be followed in all cases: 1. an intake visit by the doctor of the institution must ensure that the disease or disability is consistent with the life of the structure 2. a joint project, around the child, shared between professionals and parents is set up 3. specialized support services after the child outside of the establishment and regular exchanges with these services are essential to ensure consistency in supporting the child and family 4. an individualized project host must sign contracts this home

Accompanying the team is assured, according to the disability of the child, the doctor of the structure, the psychologist, the psychosomaticienne, who come by their specific training and supplementary food for thought. Although the role of the referent is essential in these receptions is the team as a whole is concerned.
The administrative contact for the first adjustment period

the interview with the director: she receives each family and after evaluating accurately the needs of home for the child, this structure and its specific features.

After the paperwork, the Director organizes the schedule with the families of the first meetings between the child's parent and the host organization for the adjustment period.

A person called "reference" receives the parent during the first appointment. The adjustment period allows each family to get acquainted gradually with the host organization and the team. This period is intended to know, to exchange information and to install and mutual trust. The adjustment period is spread over several weeks (2 to 3) and is variable and adjusted according to the evaluation of the experience of the child and his parents during these meetings. After some time spent in the structure with her child, the parent leaves the reference person to take over care of the child in his presence. So over the meetings of the reference person and the parents agree whole time of the first separation. First, relatively short, this separation is gradually increasing.

THE CHILD WITH A CHRONIC ILLNESS

The child with a serious medical illness runs the risk of developing psychological problems related to their illness. Unlike children with seasonal diseases such as influenza, the child with a chronic illness must face the reality that the disease will not be taken away and you can even get worse. The child and adolescent psychiatrists indicate that most of these children initially refuse to believe they are sick and then feel guilt and anger. The toddler who can not understand why they may assume ill he is being punished for being "bad." You can get angry with their parents and their doctors because they can not cure it. May react strongly if you spoil much, if they laugh at him, or if you receive other care. Uncomfortable treatment and restrictions on your diet or activities can and do embittering reserved. A teenager with a long-term illness or chronic may feel that pull in opposite directions. On the one hand needs to address the physical problem, which requires that depend on their parents and doctors. On the other hand, the teenager wants to be independent and participate with friends in various activities. When the adolescent with a chronic disease is to stop taking their medication without consulting your doctor, because he wants to show who is in charge of his own body as other teens. Chronic diseases can cause the child to fall behind in school or try to avoid attending.This can increase your loneliness and make you feel different from other children.Parents who want to help their child everything possible should be alert not only to his illness, but also their skills or talents. The child and adolescent psychiatrists know that if you overprotect your child will never learn to socialize or have difficulty separating from parents when it is time to participate in school activities. Being in contact with other people who have adapted to living with a chronic illness can be very beneficial for the child. During prolonged periods of hospitalization and recovery at home, children may develop excellence in a "hobby" or hobby, or developing a special talent, like art or languages. They can also learn all about their disease. These activities are healthy from the psychological point of view and should be encouraged and promoted. Children with chronic diseases receive the attention of a team of medical specialists.This equipment often includes a child and adolescent psychiatrist, who can help the child and the family develop a healthy psychological life to the disease and its effects.
The problems of children with disabilities and their families An emerging issue

Increasing year by year the children who suffer from some physical disability and or mental and, more generally, chronic diseases, and this paradoxically thanks to advances in Pediatrics and Neonatology, they can save children with serious illnesses that until a few decades does not have survived. The advances on the diagnosis and treatment have made it down the infant mortality rate, which in century amounted to 174 cases per thousand, in the 50s went to 52.7, dropping to 4.4 in 2001 and up to 3 , 6 in 2008. However, the current goal of medicine is not only survival but also quality of life of these children with chronic illness, many of whom are carriers of some physical or mental impairment. Currently in Italy there are about 3 million children with chronic disabling disease. Disabilities may be congenital, or derived from neonatal problems, or acquired diseases such as cancer, or injuries, and represent, in Western societies, where thanks to sanitation, vaccines and antimicrobial drugs are no longer infectious diseases the leading cause of death, the new frontier of Pediatrics. This configures new cultural needs, social welfare and, as pointed out by Alberto Ugazio, President of the Italian Society of Pediatrics, the National Congress held in Rome from 20 to 23 October 2010: "The organization must be structured to ensure adequate health care and continuity of care to this end weaker and in need of care, so now more than ever important that the child is at the center of social and political choices of the country. "

The syndrome of the broken doll

Having a baby for every human being is probably the greatest joy and the excitement and fuller, the total self-fulfillment, a flood of expectations, aspirations, happiness, but also anxiety, worry, fear ... And if you fear the most feared come true, if the dream of a healthy child shatters the nightmare of a child with problems, it makes room for the utter despair, the future seems broken forever the face of this new dimension of existence that comes suddenly, seizing the parent unprepared and disoriented. We doctors call "broken doll syndrome" complex psychological situation in which parents are notified of the diagnosis of which is the child's disability. Disappointment, guilt, anger, denial of reality, suffering acute, profound prostration, painful compared with healthy children, inertia and helplessness, a desire to escape loneliness and emptiness, disorientation, anxiety, are just some of the aspects that characterize this syndrome. The involvement and education of parents of a sick child from the team physician are essential to turn the disadvantage of starting. Since the diagnosis, and throughout the next process, parents should be guided, supported, aided, accompanied by the hand from healthcare professionals, so do not feel the need to succumb to the unexpected defeat but are open to the hope of rehabilitation, informed of their rights and varied range of supports and services, willing to accept the new life that awaits them, conscious of the great difficulties but also of great satisfaction that their child will riservargli.

A child and a parent other than special

A child is no worse than a normal child, is just a little 'special needs and parents with a little' special. The child who has evaluated and developed before it, like all human beings, for what it is and not for what you will be able to do or produce. For a disabled child more normal things, trivial or will be granted a conquest difficult and sometimes painful, but this will give them a deeper meaning and a more intense flavor. The hidden potential of children with disabilities can sometimes exceed the expectations of doctors. It is worth to bet on him because his future is equal in dignity to that of a healthy baby. To overcome the prejudice that a child is different in some way inferior to others, coming up to him, not with pity but with unease and empathy and constructive. Every little while, and its low potential to be welcomed and nurtured. Every slight and insignificant result will be wonderful because it ripped to an unjust fate. The doll was broken, but you can put those pieces together to build a future that may hold different satisfaction maybe but certainly not less beautiful than those of a healthy child. The parent of a disabled child must learn to be "a parent loves a child for what is, for what it is, and what is not", writes Michela Capone, the mother of Mark, a boy now thirteen years old Sardinian with severe psychomotor retardation and language that only 11 years has been the accurate diagnosis of his illness, the rare microdeletion of chromosome 2. The mother tells the story of this motherhood difficult, this son differently in the book "When you learn to tie your shoes," Carlo Delfino publisher. A sort of travelogue, painful, exciting but also cathartic, because the suffering, fear and loneliness are born at the end purpose of hope, through the project to build a reception center edge. The book recounts the odyssey of Mark and his family, from waiting to premature birth, the discovery of the first signs of the delay to the ordeal of medical visits, through clinics, hospitals, clinics and rehabilitation centers, including bureaucratic delays and difficulties for Support and integrates well in school, with a shrinking number of years of available relatives friends, and rather strong, real solidarity among families who live the same experiences. Michela Capone decided to donate the proceeds from the sale of the book to the Association "Peter Pan", founded in 2000 by a group of families with children with pervasive developmental disorders and other debilitating neurological disorders. In particular, the aim is the creation of "Peter Pan House" for adolescents and adults with neurological diseases. The project, still in its infancy, borrowed from similar experiences carried out in Norway with good results, provides a farm-community where disabled people can do work, such as organic vegetable gardens, poultry farming, maintenance of greenhouses and gardens, games of relationship, social and health rehabilitation programs.

Inclusion in school

One of the crucial problems of children with disabilities is social inclusion, integration starting school. He recently made headlines the news of the composer and professor of harmony at the Conservatory of Milan, who have pronounced sentences discriminate against disabled children. Federico Bianchi Castelbianco, psychotherapist and director of the Institute of Developmental Ortofonologia of Rome, in this regard has emphasized instead the presence of children with disabilities in classes, as well as being beneficial to the disabled child, has led to greater care and use of resources in primary schools, and above all taught the principle of respect and tolerance for other children, as well as giving everyone a chance to understand what the real tragedies and problems of disabled people and their families. A "quality school" is just right for children with Down syndrome has claimed the Coordown (National Coordination of Associations of People with Down syndrome) on the occasion of National Day of People with Down syndrome, 10 October 2010. The campaign has started from September 20 through the sending of postcards of protest to the Ministry of Education. Sunday, October 10 have been set up over 200 meeting points throughout Italy, in the squares and near churches, shopping centers, where volunteers distributed information materials on Down syndrome and offered a board / message of chocolate (made with cocoa from the fair trade) in exchange for a donation to support the projects of the 80 associations that belong to Coordown. The National Day, as every year, aims to sensitize public opinion to create a new culture that overcomes prejudice. "Today - reminds Coordown - there are many people with Down syndrome included actively in society: people working, practicing sports, driving the car, who graduate or graduate, who live alone or in pairs independently . To achieve these objectives, the school is key: the message is that, if the school is quality, the future is of quality. " Even parents of children with muscular dystrophy asked the school greater assurance of commitment and attention. In Italy some 4,000 students were affected by Duchenne muscular dystrophy / Becker, a serious genetic disease that causes progressive muscle degeneration. The Association of Parents Parent Project Onlus shows that too many schools in our country, have not made adequate programs to ensure the integration of these pupils, for lack of a genuine understanding of issues relating to disease. To meet this strong demand, Parent Project Fund has developed the project "School Families Dystrophy Network," which allows you to start a consultancy that will involve the schools of six Italian regions (Lombardy, Marche, Lazio, Puglia, Calabria and Sicily). Thanks to the project, it will be possible to develop some experimental work that, through the specialized knowledge acquired by the Centre Listening dystrophy (CAD), will foster a real path of support and guidance in the integration process. At the end of the work to be produced "Guidelines for Duchenne inclusive education". The objective of the project is to analyze the concrete practices of inclusive education starting from the points of the law firm, to revisit the teaching methods and recalibrate interventions in an integrated manner, according to the fundamental principle that the family-school collaboration is a prerequisite for success of inclusion. The training and awareness, touching the difficult issue of inclusion of persons with physical disabilities, will develop best practices that can be a model for other disabilities. An 'other big challenge of the school is represented by specific learning disorders (DSA) as dyslexia or dyscalculia. There are approximately 350 000 Italian students aged 6 to 19 years (4-5% of the students) to be affected. On 29 September, ad hoc legislation was passed that recognizes the

existence of these disorders and encourages the school to identify and define the locations and early stages of the diagnostic and teaching-learning through the use of tools and countervailing dispensativi. The law and its objectives were presented to the Senate dall'Aid, Italian Dyslexia Association: Right to early diagnosis, personalized lesson plans, dispensation from certain activities (such as writing on the blackboard or read aloud) and use of technological tools (word processing, calculator and computer) support. For teachers the task of preparing the plans educational customized (PDP). The objective of PDP is to allow a good / better quality of life to every student and student with DSA, giving them the opportunity to learn in accordance with their characteristics. It is therefore a teaching plan. But custom, because the teachers of different disciplines, working in teams, will have to consider the strengths of their student and his particular needs. Eid has already made a proposal on personalized learning plans available through its service called Help-line. The importance of education and training is also emphasized by the Italian Blind and visually impaired (Uici), that the party of the association for 90 years, in Rome, has rewarded five personalities who have distinguished journalistic contributions , political, moral, given the association (Carmen Lasorella, Enzo Bianco, Gianni Letta, Andrea and Joseph Monorchio Vegas) and five blind men who, for the determination and demonstrated achievements in life are as normal (the professor of mathematics Angelo Bella, gold at the Paralympic World Swimming Camellini Cecilia, the writer Marcantoni Mauro, author of The blind do not dream the dark, which collects 80 success stories of the blind, the sound engineer and sculptor Felix Mirco Mencacci Tagliaferro now engaged in cooperation with the tactile museum in Ancona Homer playing the Veiled Christ of Naples). The importance of study for children with disabilities is confirmed by recent studies that indicate that reading a book can even be therapeutic even in severe mental retardation. The "bibliotherapy" "helps the disabled person to reflect on themselves, to confront, to enhance its emotional and cognitive skills, find solutions to the discomfort he is experiencing. Recent studies have shown that bibliotherapy may reduce the hours of rehabilitation therapy. For projects that are important to the targeted reading disabilities, such as the initiative "Readings of Hope", started from October 2010 by the Center of Hope Todina Fratta, near Perugia, a structure that since 1984 offers a rehabilitation and socio- education for children, teens and adults with disabilities.

What do you know of disabled people "normal"?

Despite the various campaigns of communication focused on integration in the Italy of 2010 there are still a number of platitudes about the disabled, as revealed by the Censis research on social perception of disability: "The disability of images, experiences and emotions", made during the ongoing project "The centrality of the person and the family in health systems: reality or goal," launched by Cesare Serono Foundation. The 82, 9% of the sample used by Censis claims to know the Down syndrome, but it is very widespread clich that the report is rightly described as "bordering on racism", that all persons with Down syndrome are similar to each other, both visually and in character, considered

true by 2 to 3 (66%). The figure reaches 75.6% among those less educated and remains high even among graduates, in 60.5% of cases. Furthermore, 55.7% of respondents believe that in most cases, persons with Down syndrome die young, not exceeding 40 years of age, when in fact the average life expectancy is now over 60 years. "The misconceptions seem to have settled, in a sort of background noise information, the effect of communication media on the subject that is often confused and sensationalist" denounce Censis Foundation and Serono. To counter this, it is important to explain the disability to healthy children from an early age, using language appropriate to them. In this sense, the association Anffas Trentino has promoted the initiative to tell the children with disabilities in their language of choice, that of the comic, giving the prints a publication targeted at children of primary schools, which carries the message that the Disability is not a disease but a condition of life that leads to shortages, but not lack of skill. And so people with disabilities are unable to act, but are simply more difficult and take longer than others. Therefore the condition of the disabled person must find space and visibility, and especially the right of citizenship in the community. The comic tells the story of Ricky, a baby rhino without a horn, this outcast from the herd, which is led by his family in the remote village of Rin Town where you practice the respect for diversity and short-tailed monkeys, which, although not being able to hang from trees as their peers, however, able to demonstrate the ability to clean up the jungle at the bottom corner defaced by litter and waste of any kind. The booklet, printed five thousand copies per hour, is just the first of a series already being processed. The next episode will feature a koala who can not climb trees: a story to treat severe and profound disabilities. The comic will be distributed in schools, libraries and while all the awareness-raising initiatives organized by Anffas Trentino.

The problems of siblings of children with disabilities

When dealing with the problems of disability, we often forget the needs of siblings of disabled children, who often manifest psychological and relational difficulties. The presence of a sibling with disabilities represents a source of great distress and suffering, as well as a responsibility that affects their lives irrevocably. Siblings often see neglected their needs and are forced to make difficult adjustments. For children, the emotional stress acts as a "poison" neuronal organization, particularly in the areas delegated to the control of emotions, with long-term consequences. For this reason, the ACP (Cultural Association of Paediatricians) proposed on the occasion of its twenty-second national congress, held in Palermo 7 to 9 October, a study of the entire national territory, involving families, practitioners, pediatricians, and community associations , on the needs of siblings of disabled people. "The support interventions, centered on disability, almost never consider the brothers-Thomas explains Montini, Campania representative of ACP and coordinator of the study-while for an effective support is needed to identify protective factors that are also targeted the brothers." Said Paolo Siani, National President of the ACP, "is not the first time that the ACP addresses the issue of siblings of children with disabilities, who have defined themselves as strangers in the history of the disease or

disability, and in 2005 the Association had reported that studies have been largely devoted to the impact of disability on the affected child and its parents and siblings of the experience was almost ignored. " Among the measures that could be implemented, the ACP highlights the need for network operators to support families and will facilitate the opening, preventing it from shutting itself; help parents by an operator who accompanies the child with disabilities in school or rehabilitation center or to help him wash, leaving them more time to his other children; logistical support; a good deed counseling; streamlining the bureaucracy, which often forces families to strenuous routes for basic rights .; measures which will enable the brethren to build friendly relations with peers outside (sports, school, play areas). In summary, the "system" that must meet his family and not vice versa, with an action type tutorial and multidisciplinary. The imperative is to facilitate the acceptance of the disease and support a sustainable path that gives the parent peace of mind and his family.

The problem of the children "stuck" in hospital

One of the most dramatic cases of disability affects those forced to live in hospitals, the severity of the disease, or the difficulty of local services and the family in charge. In Italy are 1,366 children and youth with disabilities housed in social care facilities (ISTAT 2006). Represent 8, 3% of children who for various reasons live outside the family. Children who are born, live and grow up in a hospital ward. The causes can be either health or social. In the first case the resignation is hampered by difficulties in obtaining an adequate response in the territory, which should ensure the continuation of treatment at home. In the second case, however, families are not there, or are inadequate to care for the child. When health problems are welded to the social disadvantage, are likely to become insurmountable. Although there are Italians, in many cases, children stuck in hospital are mostly foreigners and Roma. Finding a solution for these children is not easy. The group homes equipped to tackle such complex problems can be counted on the fingers of one hand, adoptive and foster families are scarce and too few hospices. Thus, some children become great within the walls of a hospital, with doctors, nurses and volunteers to take the place of parents. To accommodate the most difficult cases have been established, especially in the north, residential communities, such as Milan's community "La Rondine" of the "footprint", but this year the association "L ' ability "has opened another house to accommodate children from 0 to 10 years with disabilities at birth abandoned, neglected or abused by their parents, thanks to the collaboration of 4 foundations (Cariplo, De Agostini, Oliver Twist and Human Progress) that with a contribution 610mila of euros have funded the total cost of the first year of operation, and with the agreement of the municipality.

The importance of home care for disabled

To claim the same families of people with severe disabilities, it is "vital" to their home care service, which offers support and socio-educational material to personal autonomy of the patient and family. For this purpose, we have structured social cooperatives who provide care for people with disabilities for several purposes: to keep them in their home environment and social conditions in the most appropriate, encourage the inclusion familial, social, educational and occupational corroborate the psycho-emotional support their family. On 28 October 2010, the cooperative "Sunbeam", operating at Castellammare and chaired by Dr. Juliana Maglio, held at the Ocean Palace a successful workshop entitled "Special Mom" to deal with the experts-I as a pediatrician , the psychotherapist Rosario Di Nocera, the neuropsychiatry Maria Theresa Martell Joan Piedipalumbo teacher, and, representing the institutions, the councilor for social policies of the municipality Emanuela Romano-and especially with parents and young disabled people themselves, the difficult issue the joint parenting of a disabled, with the psycho-emotional, medical practices that meet daily.