Of Maria Giovanna FaiellaThe 27-year-old boy, not self-sufficient and with multiple disabilities, receives highly complex integrated home care (ADI) care at home, entrusted to external companies
Sara Bonanno takes care of her son, 27 years old, not self-sufficientassisted at home for over ten years with integrated home care (ADI). «I chose not to “lock up” Simone in a nursing home (Rsa) – says the mother, who was widowed at a very young age -. My son won’t live long, I wish his life it was at least dignified and serene as much as possible, at his house, surrounded by the affection of loved ones. now, however, I fear his hospitalization in RSAagainst his (and my) will.
The reason? I have
asked only what is rightfully his, that is continuity of care and nursingas required by the Lea (DPCM of 2017 “Definition and update of Essential levels of assistance”, ed. Here we explain what they are). In the last two-three years, however, the continuous alternation of nurses, 58 in less than six months, was causing serious damage to the health of my son, who has complex care needs (is in ADI with a PAI-Individual assistance project of an intensive and complex level, ed. More information here). The ADI service – specifies Bonanno – is not carried out by nurses employed by the ASL, but is entrusted to external companies accredited by the Lazio region (also occurs in other Regions, see below)”.
Complex health needs
Simone lives on a wheeled bed, feeds on artificial nutrition through a tube that connects the stomach directly to an infusion pump, also used to administer medicines; to communicate with others use the Augmentative and alternative communication (CAA); can breathe independently for a few hours, then needs the non-invasive ventilation (NIV) for about 18 hours a day (at night and most of the afternoon). «In the morning he manages to stay without a fan but sometimes “desaturates” due to severe apneas – explains the mother -. His body and brain are no longer oxygenated, he falls into a sleepy condition and, if he is not put on the ventilator, he could be gone in a short time. Recognize carefully everyone the signals related to the beginning of a desaturation is essential to intervene promptly without being forced to reactivate breathing through more invasive resuscitation maneuvers.
« To do this, the nurse must know Simone well – underlines Bonanno -. For example, my son often realizes that he is tired and he asks to be attached to the respirator, but he does it through Alternative Augmentative Communication, squeezing a tube five times. Have a nurse who can recognize crises and intervene immediately independently would allow me – as has always happened when there was a nursing team continuously – to sleep, take care of myself and even go out (I haven’t done it for two years)».
58 nurses in 6 months
The odyssey began with the pandemic. «After the lockdown – says Simone’s mother – the last nurse left to assist my son also left, so I asked for her to be replaced and the chaos began, with the succession of “passing” nurses, with a VAT number, with a collaboration contract, some retired, others waiting to be called for a permanent contract in the public sector. There have also been some nurses who had never seen the artificial feeding pump. Every time I had to explain my son’s health conditions, complex and unstabilised”.
Bonanno protests with the competent ASL (Roma 2) because the continuity of care for her son is not guaranteed. He recounts: «Faced with the documented disservices, the ASL replied that I could choose, among the accredited operators, another company providing the ADI service; I did it but to no avail: in less than 6 months, 58 different nurses have come home – remembers Bonanno -. My son was destroyed: a person with chronic neurological and neuropathic pain, blind and other very serious disabilities, who was manipulated like an inanimate mannequin by always foreign hands and by passing staff who didn’t even waste two minutes talking to him».
Mom, caregiver and also “nurse”
Simone’s mother continues: «Un example of the result of a continuous turnover? Granulomas, lesions or nodules that can grow around the ostomy that Simone has, create discomfort and pain especially when they become infected. My child she often had infections with pus oozing and, in the long run, a large keloid (fibrotic lesion) had formed which it would have to be surgically incised. When I stopped taking medication ostomy by the many “passing” nurses and I started to do it myself, thanks to the constancy of a regular medication, the keloid deflated, until it disappeared completely. Since then my son has had no more granulomas, infections and pain. It is all documented by the medical reports »underlines Bonanno, who decides not to let the nurses into the house anymore. He explains: «I sent an email to the ADI manager to inform him of my decision, which it wasn’t the “oddity” of a caregiver momgiven that the company providing the service had rejected Simone (even if the agreement does not provide for it) and myself I have to protect my son’s health. The World Health Organization has been saying it for decades: an exasperated turnover of professionals so invalidates every health intervention that it represents a health risk for the patient”.
Bonanno resorts to legal action but also makes a proposal. He tells: “I opened a dispute with the ASL for inadequate assistance, asking the judge that the integrated home care service was no longer entrusted to external companies, given that the outsourcing did not work, but to nurses employed by the ASL, specialized in my son’s health conditions. I’m awaiting the verdict.”
Who is responsible for it and how does ADI work?
The National Health Service guarantees integrated home assistance to non-self-sufficient people and in conditions of fragility. The Adi is part of the Essential Levels of Assistance, therefore it belongs, at least on paper, to anyone who has the requisites to access it, regardless of where they reside. The goal is avoid, as far as possible, the patient’s hospitalization in a residential facility, to ensure a better quality of life but also to contain the high costs of hospitalization in RSA. The Regions can decide to entrust the Adi service to external subjects, accredited on the basis of specific criteria.
“It is currently one Babel since each Region is using different criteria for accrediting providers – says Giuseppe Milanese, president of Confcooperative Sanità and of the Osa cooperative which operates in Rome with 75% of the staff hired -. The accreditation system is undoubtedly positive compared to the mechanism of competitive tenders, but it needs precise rules all the more in an area like theHouse assistance That it requires, in addition to skills, also a vocation: to enter the house of a person who is ill you need to have aptitude, empathy, know how to communicate – underlines Dr. Milanese -. Otherwise the risk is that they are created, as is already happening, companies with an exclusively profit purpose which certainly do not guarantee continuity of care. It is one thing to perform a service such as changing the catheter or drip, another is to assist patients with complex needs at home in Adi. For years – reiterates the president of Confcooperative Sanità – we have been asking for a single direction at national level with clear and homogeneous rules for accreditation, including the organizational plan with competent and trained personnel as is already the case for the accreditation of hospitals, and then rigor in measuring health outcomes».
The response of the ASL
Who monitors compliance with the requirements? For its part, the Asl Roma 2, consulted by Health Courier, specifies that the providers accredited by the Region «organize the services on the basis of the Individual Care Plan (PAI). The relationships between the patient and the accredited subjects are guaranteed by the Asl Case Management. In the specific case – explains the ASL – the situation has been repeatedly evaluated also in consideration of the fact that since February 2022 nurses have not been allowed access, even if they go to their homes ».
Support administrator
For over nine years, Bonanno has also been «support administrator” of his son. The legal institute, introduced with the law n. 6 of 2004, has the aim of protecting “people who are wholly or partially deprived of autonomy in carrying out the functions of daily life, through temporary or permanent support interventions”. Bonanno says: «I learned by chancea few days before the second hearing scheduled for early February, that the procedure for my replacement as support administrator had been initiatedwithout even being summoned. But why? I have always looked after my son’s interests, it was enough to read the annual reports where, in addition to the detailed account of the network of professionals, friends and associations that have always surrounded and supported Simone and me, it is documented that all the money that enters, including mine survivor’s pension (minimal, because my husband died very young), they are employed entirely for my son, and they are not enough, so much so that charities help me to pay for the medicines that the public health service does not pass».
What protections? The “reasons” of the ASL and a mother
says the Asl to Health Courier: «In August 2022, for the sole purpose of protecting the patient’s health, the head of the UOC Home Care presented a exposed to the Public Prosecutor’s Office reporting the problem. Following this report, in December 2022, the Public Prosecutor deemed it appropriate to ask the Guardianship Judge to proceed; the judge has summoned the parties and we are waiting to know the decision to resume continuity of home assistance ».
Simone’s mother feels oppressed. She recounts: «In the complaint it is written that in extrema ratio one must resort to the forced hospitalization at an appropriate facility, i.e. in an RSA. But institutionalize Simondistancing him from his loved ones, from his friends, from his world, it would mean his end. The lawyer requested and obtained a new home hearing (my son cannot be transported to court) scheduled for mid-March. As a mother, caregiver and also as a support administrator, all I ask is that my child receives adequate and dignified assistance at home» concludes Bonanno.
