Reference:
10_Dr.ﾠM.ﾠRodocanachi – Medical Rehabilitation Centre responsible Istituto Don Calabria, Milan
Abstract:
In recent years, the advancement of Medical management in Rett syndrome has been important, especially in the form of day hospital admissions or shorter in some pediatric hospitals where the girls / girls were able to enjoy an adequate framework (growth and nutrition, genetic counseling, treatment of epilepsy). However, taking charge of engines and rehabilitative aspects has not yet found a space uniform approach, nor are prepared guidelines that can help local rehabilitation teams to appropriately address the choices and rehabilitation requirements. It ‘showed an extreme disparity of rehabilitation approaches, poor early management of musculoskeletal issues and a general tendency to rehabilitative interventions not targeted, often with a break of rehabilitative in delicate moments or failure of the organization of postural and motor. Often it is not an identifiable referent of the rehabilitation process, there is “a thought rehabilitation” and many interventions are made “on the spot”, often privately choice for the family. Sometimes there are even therapists or teams who do not know how to handle “the case”, physiatrists territorial serious difficulties to make a correct choice of aids to prescribe. Objectives For the AIR initiative and in collaboration with the Department of Health of the City of Milan, in the first months of 2009 was created an exchange with the Rett Association of Israel in the person of a therapist and researcher of great competence, which 20 years dealing with this syndrome. Were subsequently sent to Israel for training and exchange two physiotherapists. The rehabilitation model of the Israeli team is a multidisciplinary assessment and enlarged, extended in time (three / four hours including the synthesis and return to the family and external stakeholders). The grading of the girl / girl is conducted in the presence of most of the actors involved in the rehabilitation project (physiotherapists, communication, music therapist, teacher educators, and of course families). This valuation approach allows to give a single space / time for a global response by the team evaluating families, therapists and any external teachers or educators, to assess aids or devices postural important to show mode of action by the evaluating therapist to therapists from other sites and no experience on how to intervene on our Italian reality Syndrome Rett.Nella establish a similar model would have the obvious advantage to dedicate a space to provide appropriate and targeted responses to children and families from cities different in one day, the model may be that of a sort of Day Hospital rehabilitation possibly to associate with the DH hospital. A model of this type would also have a strong educational value, if the operators of the team contacts of cases could attend the final return at the end of classification. But they could also be designed and structured training sessions to be repeated periodically, as well as the presence of therapists in training during the days of evaluation. The goal is that the specialized team, as well as to operate in the center of Milan Don Calabria for all families nationwide with girls with SR, is also traveling and can play at a regional level counseling centers that regional leaders will identified as centers available to accommodate staff and family for advice and, in the future, that the staff of the center will be the reference point for the region.
PROJECT DETAILS
beginning: 2008.
end: 2010.
Country of research: Italy
Counry of funding source: Italy
Funding organization: AIRETT
Financing: PRIVATE FUNDERS – 50 000 €