Sixty-seven thousand small fragile children who live with a disability every day and have to face – with the help of their families and caregivers – very complex practical difficulties, even more so in the years of the pandemic. The plan developed by the Italian Federation of Pediatric Doctors (Fimp) is dedicated to them: it includes four concrete proposals: frailty income for parents and caregivers of children with disabilities, specific training to be able to arrive first at an early diagnosis and get to know the whole assistance network, dedicated CUP desk in each ASL and clinic reserved for minors with serious pathologies in each Community House, within which pediatricians will act as Case Managers, involving each time the most suitable figures for the solution of the problem. The proposals were presented today to the political world during a virtual press conference on the theme “Pediatrics in disability: future scenarios”, hosted by the ladies and gentlemen Fabiola Bologna ed Emanuela Gagliardiat the Chamber of Deputies.
The social function of pediatricians
There is no doubt that the pediatrician represents a point of reference for families, even more so when the child has chronic pathologies or frailties: “The relationship of trust and proximity with families – he explains Antonio D’Avino, president of the FIMP – makes the Free Choice Pediatrician a health point of reference, but also a social one. And from our observatory, in recent years, we have recorded an intolerable impoverishment of the assistance offer reserved for over 67,000 fragile minors and those who take care of them every day ”.
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The shortcomings of territorial medicine
The Covid-19 pandemic has further widened the range of hospital-territory integration: “Children – continues D’Avino – are treated in excellent facilities and then taken in charge by the Family Pediatrician, but everything else is missing , from the connection with home care to that with the figures involved in specialist therapies. There is also no specific training that allows us, during the Health Reports, to know and recognize the signs of rare neurodevelopmental pathologies and that allows us to guide parents in the analysis of psychomotor anomalies “.
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Only 500 euros of monthly allowance
The Fimp has already taken action in this sense with the “PETER PaN” project (Territorial Pediatrics and Early Recognition of Neuromuscular Diseases), but a structured intervention is needed within the next National Collective Agreement. “From the point of view of the economic and financial stability of the families involved – adds the president of the Fimp – we consider that parents and caregivers benefit from about 500 euros of monthly allowance. Really nothing if you think about the level of well-being compared to the general population: the average annual income is in fact € 17,476, 7.8% lower than the national average. State transfers and subsidies are not sufficient to guarantee similar living conditions to the rest of the population. The income of fragility serves to acknowledge this difference and to bridge it ”.
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The numbers of childhood disabilities
The hospital discharge forms show the presence on the national territory of about 11,000 children eligible for palliative care and it is estimated that one child out of 200 has a chronic pathology with high care complexity, including neurosensory and motor disabilities. “67% of families with a disabled person – he says Serafino Pontone Gravaldi, FIMP National Coordinator on Rare Diseases – can’t afford a week’s vacation a year away from home. A house in which healthy brothers and sisters often live together, whose daily fate is closely linked to that of those who are sick. A house in which the relationships between the couple and the parents with the other children resist, without any support. We ask that the territorial policy is activated to create local structures and associations, adequately prepared, to which families can entrust the child for a few days, catch their breath and start again with new forces. There is European funding, let’s use it ”.
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The fatigue of the parents
And then there is the great effort of daily management (practical, but also emotional) that weighs on parents and which often no one notices. “The families of a severely disabled minor are also exhausted by their invisibility – he says Renato Berardinelli, National Secretary of the Research Center “Adopt an Angel” CeRS onlus. “Our life is made up of effort and numbered minutes: imagine having to take care of everything. And if your child is a minor, by law you cannot be absent even when home assistance comes into the house “.
The weight of bureaucracy
In addition to the time of direct care of the child, parents have to play with the ‘pinball machine of bureaucracy’. “Sometimes – he declares Berardinelli – we are crazy balls around the city, between requests for attendance allowances, booking priorities, exemptions, treatment plans and follow up. Not to mention the swollen folders of us parents’ documents, including Law 104, INPS papers and that pension that really seems like a mirage to us. A dedicated CUP desk in each ASL would allow us to have more time for our children, instead of dedicating so much to stamped papers. An income of fragility would make us feel more normal than you think ”.
The support of the institutions
The proposals of the Fimp were presented to the political world with the aim of obtaining their support: “The burden of these families is enormous – he declares Fabiola Bologna, Secretary of the Commission for Social Affairs and Health | Chamber of Deputies – it is still a pillar of welfare that often does not find the answers to the needs of everyday reality, made up of physical and psychological fatigue and often of renunciation. The proposals of the FIMP must be shared, discussed and supported: the life of a family with a child with high care complexity involves more visits, more time dedicated to the coordination of care and assistance and many costs by the family. Furthermore, the psychophysical well-being of the parents, caregivers and brothers and sisters of these children must be safeguarded. We need to build paths that once again unite institutions with health professionals, patient associations and families, to find solutions for the best assistance and quality of life “.
A practical guide for families
During the press conference, the ‘Includendo 360’ vademecum, produced by the FIMP, together with SIPPS and SIP, was distributed. “This is a practical guide for the protection of disabilities for families, created with the aim of bringing together the numerous and fragmented information that can be found online on such a delicate topic”, concludes the National Secretary for Scientific and Ethical Activities FIMP and SIPPS President, Giuseppe Di Mauro. “There are topics such as health, education, education, social integration and autonomy at work, without forgetting sport, mobility, money management, legal protection, the affective sphere and sexuality. Aimed at parents and their doctor, the document unfolds along a path that a child with a disability is called to face in the course of his life, from birth to after us, in an attempt to fight and defeat too many prejudices “.