I know that our loyal patrons would have preferred a post of a different tone, especially after so long without news, but there are several things going on, so your faithful scribe has chosen to publish a kind of report, from the legendary richiestaci pediatrician of the small gong, which should end up in the hands of the leaders of the ASL 3. Judge for yourself, while we knock on wood for any outcomes.
Richard's case is illustrative of how and how difficult it is for a family who finds herself having to deal with a disabled child, see recognized those rights essential to ensure their child an acceptable quality of life, falling in the paradox that precisely what should constitute an important support becomes a problem to be solved in most, with consequences as obvious as obvious.
Richard was born in June 2006 to 25th week of gestation, the outcome of a twin pregnancy with intrauterine death of his brother. His condition, determined mainly by cerebral intraventricular hemorrhage, require a period of stay at the Neonatal Intensive Care Unit of Hospital Garibaldi Nesima which lasts for 5 months, two of which our child is intubated. The hospital stay is marked by frequent respiratory crises and convulsions treated with phenobarbital, as well as surgery for the closure of the ductus and the Botallo treatment of retinopathy. Also particularly serious systemic infection, such as to jeopardize the child's life, requires antibiotic treatment with gentamicin, which can eventually defeat it, but because as a result of a bilateral profound deafness. Overcome the current crisis is particularly severe, however, the conditions of the small start to improve slowly but steadily, to enable it to discharge.
dell'UTIN Upon the recommendation of the Director, the child is immediately brought to the hospital at the Department of audiovestibologia Circle of Varese, where the team of dr. Sandro Burdo, which is absolute excellence for the treatment of deafness especially in the case of very young children with complex neurological picture, it takes charge of starting the path that led him to receive a cochlear implant in August 2008. Meanwhile, in parallel with the preparation for treatment plant that the child attends a day rehabilitation center in Catania (the CSR via Casagrande), where you try to help correct the severe ipoposturalità that afflicts him and that is a consequence of 'cerebral hemorrhage suffered at birth. In 2007, in fact, Prof. Giovanni Cioni (Director of Stella Maris Pisa), which oversees and directs the rehabilitation activities to which it is subjected Riccardo, who was diagnosed bleeding is from that resulted in a form of dyskinetic cerebral palsy type.
In essence, the situation is as follows: while having made great progress in terms of communication skills, Richard is unable to sit alone, have severe hypotonicity of the trunk and does not control his head, unable to grasp anything with his hands and obviously does not walk. Therefore depends entirely by others, not having any autonomy. Certainly, much progress has been made, compared to the day of his resignation, but the way that you find yourself ahead is long and bumpy, especially with no certainty of being able to reach its full recovery. Yet, even just to get the current state have been made sacrifices anything but small, part of our family. The travel to Varese had a rate of about once a month and more than once mother and child will have spent long periods of time, in 2008, the plant at the same time, there was the need to continuously stay in the city Lombard for eight months. This adds to the travel of the Stella Maris Pisa, although much more rarefied, the framework for regular audits of the neuromotor, or the Queen Margaret Hospital to assess the condition of the urogenital apparatus.
All these moves and stays away from home, as paradoxical as it may seem, so far has been to our cost and expense, since it is still not received any remuneration linked to the condition of the child's disability. But we approach this topic from the beginning: in January of 2007 we have applied for recognition of the condition of handicap and disability of deaf-mutism and civil. The visit took place under conditions the commission is to put it mildly uncomfortable until July 2007, in a very hot day and in the midst of a deafening crowd of people shouting, where ours was the only child present. Incidentally, at the time Richard was suffering from significant problems of temperature control, so that the temperature permanently stationed at 38 degrees. After about 8 months we have received verbal the visit. At the very least unusual, because despite the recognition of the third paragraph of the Law 104, was totally ignored and the deaf-mutism was granted only to the attendance allowance, not coaching, then, that the severity of the condition of Richard - according to anyone , specialist or not - fully justified. We have therefore been obliged to bring an action before the court, which scheduled a hearing for February 2010, and in the meantime we have introduced two new applications to try to "stabilize" the situation and above all avoid any disruption in the recognition of rights and the condition of the child's disability. To date (March 2009) does not we have come to feel nothing not even the little that has been recognized, apparently because of unspecified mistakes found during the phase Prefecture, while the costs to try to ensure our children the best that medicine has to offer are certainly not decreasing.
In light of the above, it is clear that it is necessary, by public authorities, launch a different approach to the whole question, allowing families to have full recognition of their rights and benefits to assist us and also the bureaucratic machine able to work more efficiently and quickly remission of additional costs due to the lack of organization.
How? It is vital that from the beginning, the first families to receive correct information and clear-cut, by social workers and up to date and relevant information leaflets written with clarity and simplicity. Moreover, since the number of births occur in a limited number of structures on the whole (from which, at least in the first instance, may be excluded clinics, which generally are not equipped to provide services and neonatal intensive care for at-risk cases therefore support the hospitals), in cases like the one mentioned would be the same medical team to activate the mechanism, signaling to those in charge of public service to contact families on the basis of the clinical picture of the patient. Will then a social worker with the "pulse of the situation" to indicate the type and details of parents required to be submitted from the outset to avoid errors whose correction - when given during the procedure - is complex for all stakeholders.
With regard to visits to the office mobility, it is indispensable to a different program. Creating for children who have different needs from those of adults assisted, a dedicated lane to allow the completion of the process in a reasonable time (at present, it should be spelled out in the waiting time for each step need not be used by law , exposing the public buildings measures to provide redress for citizens). And also speaking on the criteria of rivedibilità: to establish a review after three years of a child with a genetic disorder (such as cystic fibrosis) or bilateral profound hearing loss as in the case of Richard, is contrary to what is required by law that the simple common sense, getting the deleterious effect of flooding the department responsible and ask the families time and energy certainly better used to assist their children. And yet, not least, provide for the conduct of visits to premises more suitable than those of Via Ventimiglia, the lack of logistics to accommodate large numbers of people with various diseases is all too evident, especially in the case that some experienced, perhaps precisely because of the crowd and hardship arising from the latter, were to blame an illness, given the lack of medical support.
Finally, it is essential to improve coordination between different government agencies involved in the proceedings, the arena often inexplicable penalty to the files in transit from one office to another, perhaps to the absence of a bureaucratic document that the parties concerned but not essential know they have to produce in their care. Needs to be addressed at different levels, but whose weight could be reduced, even in this case, a good information at the beginning of the process, Acting perhaps to produce a single solution to the first entity receiving all necessary documents for the later stages, ensuring the completeness of each practice and facilitating the work of everyone involved.
All this with the hope that tomorrow our son, and all other more or less similar conditions, can occur again at those same offices and say "thank you for what you have done for me, but now I'm cured and I have most need. "
Richard was born in June 2006 to 25th week of gestation, the outcome of a twin pregnancy with intrauterine death of his brother. His condition, determined mainly by cerebral intraventricular hemorrhage, require a period of stay at the Neonatal Intensive Care Unit of Hospital Garibaldi Nesima which lasts for 5 months, two of which our child is intubated. The hospital stay is marked by frequent respiratory crises and convulsions treated with phenobarbital, as well as surgery for the closure of the ductus and the Botallo treatment of retinopathy. Also particularly serious systemic infection, such as to jeopardize the child's life, requires antibiotic treatment with gentamicin, which can eventually defeat it, but because as a result of a bilateral profound deafness. Overcome the current crisis is particularly severe, however, the conditions of the small start to improve slowly but steadily, to enable it to discharge.
dell'UTIN Upon the recommendation of the Director, the child is immediately brought to the hospital at the Department of audiovestibologia Circle of Varese, where the team of dr. Sandro Burdo, which is absolute excellence for the treatment of deafness especially in the case of very young children with complex neurological picture, it takes charge of starting the path that led him to receive a cochlear implant in August 2008. Meanwhile, in parallel with the preparation for treatment plant that the child attends a day rehabilitation center in Catania (the CSR via Casagrande), where you try to help correct the severe ipoposturalità that afflicts him and that is a consequence of 'cerebral hemorrhage suffered at birth. In 2007, in fact, Prof. Giovanni Cioni (Director of Stella Maris Pisa), which oversees and directs the rehabilitation activities to which it is subjected Riccardo, who was diagnosed bleeding is from that resulted in a form of dyskinetic cerebral palsy type.
In essence, the situation is as follows: while having made great progress in terms of communication skills, Richard is unable to sit alone, have severe hypotonicity of the trunk and does not control his head, unable to grasp anything with his hands and obviously does not walk. Therefore depends entirely by others, not having any autonomy. Certainly, much progress has been made, compared to the day of his resignation, but the way that you find yourself ahead is long and bumpy, especially with no certainty of being able to reach its full recovery. Yet, even just to get the current state have been made sacrifices anything but small, part of our family. The travel to Varese had a rate of about once a month and more than once mother and child will have spent long periods of time, in 2008, the plant at the same time, there was the need to continuously stay in the city Lombard for eight months. This adds to the travel of the Stella Maris Pisa, although much more rarefied, the framework for regular audits of the neuromotor, or the Queen Margaret Hospital to assess the condition of the urogenital apparatus.
All these moves and stays away from home, as paradoxical as it may seem, so far has been to our cost and expense, since it is still not received any remuneration linked to the condition of the child's disability. But we approach this topic from the beginning: in January of 2007 we have applied for recognition of the condition of handicap and disability of deaf-mutism and civil. The visit took place under conditions the commission is to put it mildly uncomfortable until July 2007, in a very hot day and in the midst of a deafening crowd of people shouting, where ours was the only child present. Incidentally, at the time Richard was suffering from significant problems of temperature control, so that the temperature permanently stationed at 38 degrees. After about 8 months we have received verbal the visit. At the very least unusual, because despite the recognition of the third paragraph of the Law 104, was totally ignored and the deaf-mutism was granted only to the attendance allowance, not coaching, then, that the severity of the condition of Richard - according to anyone , specialist or not - fully justified. We have therefore been obliged to bring an action before the court, which scheduled a hearing for February 2010, and in the meantime we have introduced two new applications to try to "stabilize" the situation and above all avoid any disruption in the recognition of rights and the condition of the child's disability. To date (March 2009) does not we have come to feel nothing not even the little that has been recognized, apparently because of unspecified mistakes found during the phase Prefecture, while the costs to try to ensure our children the best that medicine has to offer are certainly not decreasing.
In light of the above, it is clear that it is necessary, by public authorities, launch a different approach to the whole question, allowing families to have full recognition of their rights and benefits to assist us and also the bureaucratic machine able to work more efficiently and quickly remission of additional costs due to the lack of organization.
How? It is vital that from the beginning, the first families to receive correct information and clear-cut, by social workers and up to date and relevant information leaflets written with clarity and simplicity. Moreover, since the number of births occur in a limited number of structures on the whole (from which, at least in the first instance, may be excluded clinics, which generally are not equipped to provide services and neonatal intensive care for at-risk cases therefore support the hospitals), in cases like the one mentioned would be the same medical team to activate the mechanism, signaling to those in charge of public service to contact families on the basis of the clinical picture of the patient. Will then a social worker with the "pulse of the situation" to indicate the type and details of parents required to be submitted from the outset to avoid errors whose correction - when given during the procedure - is complex for all stakeholders.
With regard to visits to the office mobility, it is indispensable to a different program. Creating for children who have different needs from those of adults assisted, a dedicated lane to allow the completion of the process in a reasonable time (at present, it should be spelled out in the waiting time for each step need not be used by law , exposing the public buildings measures to provide redress for citizens). And also speaking on the criteria of rivedibilità: to establish a review after three years of a child with a genetic disorder (such as cystic fibrosis) or bilateral profound hearing loss as in the case of Richard, is contrary to what is required by law that the simple common sense, getting the deleterious effect of flooding the department responsible and ask the families time and energy certainly better used to assist their children. And yet, not least, provide for the conduct of visits to premises more suitable than those of Via Ventimiglia, the lack of logistics to accommodate large numbers of people with various diseases is all too evident, especially in the case that some experienced, perhaps precisely because of the crowd and hardship arising from the latter, were to blame an illness, given the lack of medical support.
Finally, it is essential to improve coordination between different government agencies involved in the proceedings, the arena often inexplicable penalty to the files in transit from one office to another, perhaps to the absence of a bureaucratic document that the parties concerned but not essential know they have to produce in their care. Needs to be addressed at different levels, but whose weight could be reduced, even in this case, a good information at the beginning of the process, Acting perhaps to produce a single solution to the first entity receiving all necessary documents for the later stages, ensuring the completeness of each practice and facilitating the work of everyone involved.
All this with the hope that tomorrow our son, and all other more or less similar conditions, can occur again at those same offices and say "thank you for what you have done for me, but now I'm cured and I have most need. "
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