After more than a year of pandemic,House assistance to people with severe disability still not guaranteed as it should. Many the critical issues: different services depending on the territory, in addition to the problem that the performance quality it is well below the levels that would be needed for fragile subjects. Yet our Constitution provides that the right to continuity of care it must be due for everyone. “We have Regions within which the services were standardized, others do a lot more effort to provide them, due to economic investments insufficient. This differentiation of treatments has brought out all the criticalities of the system welfare Italian especially during the pandemic. The people who believe themselves have paid the most of it more vulnerable and their families ”, says a ilfattoquotidiano.it the president of the Italian Federation of overcoming handicap (Fish), Vincenzo Falabella. Second Ilaria Vacca, journalist at the Legal Desk of the Rare Diseases Observatory, “most of the resources have been moved toCovid emergency, exasperating the already precarious situations of high intensity and complexity of care. With very violent relapses on families, and in particular on women, mothers e caregiver, forced to give up work to assist their family members full time, risking losing their jobs and health ”.
Outsourcing of assistance – Then there is the problem of outsourcing who provides home care services. He is convinced of it Carlo Giacobini, expert in legislation dedicated to the disabled: “Twenty years ago home care was almost exclusively entrusted to operators mainly coordinated by public services. The administrative, concessionary and management processes of ‘home care hours’ represented a significant part of the work of the municipal social services, ”he says. “The outsourcing of these services, like conventions, tenders, accreditations, a cooperative O society external it was an almost forced passage by budget cuts of local authorities. As well as a turning point was the need to bring together assistance of a strictly material type to more social and health care, if not health care ”. For Giacobini this passage “has often created station al maximum discount and increasingly crucial demands of sharing of expenses by users “. And in the meantime, “le waiting lists yes. I am elongated”.
With the pandemic, more inconvenience for families – Resources they are not enough and the demands increase, one negative spiral which could only be partially mitigated by 500 million euros made available for assistance since National recovery and resilience plan. “Home care has always been a critical issue in our health system – says the deputy Fabiola Bologna who presented a parliamentary question on the subject on May 5 – Unfortunately, due to the pandemic, the situation is further worsened, bringing deep inconvenience especially for families of children with severe and very serious disabilities “. The Consolidated Law on Rare diseases, of which Bologna is the rapporteur, “has among its various objectives that of rendering more homogeneous ed organized the provision of this service, increasing the resources for the healthcare personnel both for new hires and for the training of skills“. Falabella in this regard highlights that “there are no gods single national protocols for the management of home care. Each Region and then the Municipality intervenes in its own way. We record that in many cases there have been families abandoned “. Falabella points her finger on “welfare system that made water on all sides, the Third sector and local associations had the ability to intervene, they were the best subjects and more flexible to support disabled people “.
5 year old data on disabled care – Do one overview on the services offered and the expenses of the individual Regions is complex. Contacted by ilfattoquotidiano.it, the Office for policies in favor of people with disabilities said that the last aggregated data date back to five years ago. Even federations and subject matter experts confirm that unfortunately updates are missing.
The only source available today to measure the interventions of the Regions are the indicators on the disabled of the Lea grid (Essential levels of assistance) 2016. A jagged picture and diversified. “In addition to the absolute value of the expenditure, the interventions of the regions also differ in the importance of the various ones welfare schemes“, reports welforum.it, national observatory on social policies, in an article of 2019. “For example, the Piedmont and the Liguria are the realities where the residential regime largely prevails, while Veneto ed Emilia Romagna they are the realities where semi-residential assistance absorbs more resources ”. Each Region undertakes a particular path, there are bodies that direct the commitments on maximization of users assisted, with a limited economic intervention on the individual case, while others focus on a limited number of people with disabilities, with economic support more intensive on the single case. “The resources used in the expenditure of the national health service for disability – reads the Lea grid – are equal to approximately 3.15 billion, a fairly stable value over the last three years. In fact, this target absorbs less than 3% of the allocated resources to the Regions for the financing of the Lea ”.
The assistance falls entirely on the parents – Immaculate Esposito is the mother of two twins, Antimo and Mattia, from 16 years. Boys who have a rare syndrome live in San Pietro a Patierno, an area of Naples. They are enrolled in the first high school. “Home care comes often interrupted and we are left without the staff coming to help us at home with the continuity that is needed “, complaint to ilfattoquotidiano.it. The family has been living in a situation for months very complex: “We ask that they send us some qualified personnel compared to our needs because we have a lady of 60 years who cannot wash and follow my children’s personal hygiene. What is needed immediately is also a increase in hours home care “. Esposito asks for a specialist service for two boys with cognitive deficit “Which have been practically for a year excluded from everything and all. We cannot continue like this, this one it is not life”Says the mother. Which emphasizes the absence of a psychological support: “We need operators who are capable of handling delicate situations. For months we have also been asking for the possibility of using one psychologist at home for teenagers but we are still waiting ”. They reached an extreme point: “With the pandemic everything has worsened, the burden of assistance falls only on us parents and we can’t take it anymore ”, Esposito closes.
The shortage of specialized personnel – Federica Muller is the mother of two children with severe disabilities Sesto Calende, in the province of Varese. They are two minors, Cecilia, Age 16, e Tommaso, 9 years old, both with a very serious disability due to which they find themselves having to be assisted h24, carriers of peg, tracheo, ventilated 24 hours a day. They are the only two children in Italy to have the SMA-PME. In particular, Cecilia is in a condition of palliative care not for an end of life but to control a state of severe epilepsy. “Compared to home care, this last year of the pandemic has brought out what was already one serious situation previous one”Says Muller. “Last year we had to suspend all the home business both educational and welfare and physiotherapy, managing for about 4 months all by yourself to protect children’s health “. Later, they gradually and with difficulty resumed their activities. “The situation remains very critical, as in our territory there is a serious shortage of specialized pediatric personnel on high-intensity care patients as my children require. The services were weakened, today we often find ourselves discovered“. Federica explains that “the tele-rehabilitation for my children it is not possible. After a year, we need to reinforcements and of arms to assist our children and support our family ”. Cecilia and Tommaso’s mother complains of “having alone a therapist for the developmental age. We have no hours of relief – he adds – but only interventions to performance, as needed by non-pediatric nurses unfortunately. My children lack an expert on the subject who has the professionalism to manage them. Instead of protecting us we have been abandoned, we seem to live in a limbo made up of criticality within criticality. We manage but we don’t know how long we can go on ”.
Territorial disparities and household expenditure – Over the years the number of people who need personal care at home has increased with the development of autonomy paths and independent living, but they have not increased services provided and too often the services do not cover the needs e i needs. “Home care is a matter of competence regional and is part of the health sector – he explains Jacobins – These services are the terrain on which the very strong territorial disparity where essential levels of social assistance are lacking and where too different qualities are guaranteed. The decisive question is the economic sustainability which he has seen over the years cuts at the social and health level “. In this very delicate context, families have to make up for it. “There expense for the domicile is today for almost all a burden of families and this is in direct form with the salary of caregivers ed personal assistants is fit with the massive commitment of caregiver familiari, largely women “. What should be done? “The” domiciliary “- he says – veers, or should veer, more completely towards support and services for dignified and inclusive living”. Therefore, “a mix of interventions and supports is necessary that in part here and there are already implemented but in a completely insufficient way: from meals at home to remote assistance, from psychological support to the person and the family to the contributions for the costs of living as a prevention of the risk of impoverishment, from specialist home services to social first aid, from work on the territory and on the condominium to isolation prevention, from co-housing experiences to co-living ones, perhaps sharing some services or opportunities with the surrounding community”.