2023-11-02 21:07:21
“A cry of pain which, from the depths of daily suffering, aims to translate not only into a complaint, but into concrete proposals”. It is with these words that 90 associations present their ‘Charter for families with non-self-sufficient people’. An act of denunciation, but also a constructive document, which highlights both the critical issues of the assistance and support provided today for very serious disabilities and possible solutions. The appeal is one in particular: “The needs of the person with disabilities must not be considered as separate from those of the family and caregiver”. The people asking for this are parents of children with rare diseases, brothers and sisters of people with very serious disabilities, who have decided to put down on paper what isn’t working, asking politicians for a commitment to intervene to correct it.
The document, the promoters explain to time.news Salute, was sent in recent days to the Minister for Disability Alessandra Locatelli, to the Deputy Minister of Labor and Social Policies Maria Teresa Bellucci and to the Undersecretary of Health Marcello Gemmato. The initiative started from the associations Nobody is excluded and SCN2A Italia Famiglie in rete, who circulated the text, collecting additions and suggestions from other organizations representing these patients. We are not necessarily asking for additional resources – they specify – but for a reorganization of the management of complex situations, which takes into consideration the individual needs of the patient and those of those who care for him as a whole. Caregivers who, due to distortions, bureaucratic obstacles, geographical differences, gaps and currently existing deficiencies find themselves having to make up for everything that is missing. “Parents, brothers, sisters, grandparents” are “often driven by the lack of an appropriately organized system to the point of having to abdicate their social, relational and working life”.
In about twenty pages, the authors of the Charter analyze three key points of taking charge: the multidimensional assessment (process that frames the nature and extent of the needs – physical, mental, social and so on – of the person); home care; residential facilities for people with disabilities.
A ‘FAMILY MATTER’ – On the first ‘chapter’, that of the multidimensional evaluation, families complain about the fragmentation of the paths, poor involvement, teams with inadequate training with respect to the variety of very serious disabilities and rare diseases, little importance attributed to some aspects not mainly healthcare. The result is that often the resulting healthcare proposal is like a ‘one size fits all’ dress that does not fit well on the person and the family who has to ‘wear’ it.
To remedy the critical issues, the families propose to improve communication and the summoning of the person with disabilities for these assessments, and transparency, as well as guaranteeing the obligation of participation and consent on the part of the family in this process. They then ask for complete and “customizable” care plans, such as ‘tailor-made clothes’, and a series of corrective measures that go into detail about each problem.
HOME CARE KEY TO INCLUSIVITY – then there is the chapter of integrated home care (ADI), which is considered the key to “preserving the right of people with disabilities to non-segregation”. But to be so it needs to be improved. The problems range from the fact that the assistance currently proposed has a predominantly healthcare nature – and therefore “anachronistic”, the families point out – to the issue of regional resources which are not continuous. And, again, Adi is provided at home or at school and “only in the municipality of residence” and with these constraints “it translates into reduced inclusiveness in daily life”. Another issue is the use of the ADI “only in the presence of the caregiver”, the budgets “not aligned with needs”, the “inhomogeneities in performance and personnel”. Among the proposals, that of creating connections with other care pathways and using the socio-health ISEE tool (“calculated only on the income of the person with a very serious disability, regardless of their family’s income”).
RESIDENTIAL STRUCTURES AND REQUIRED CHOICES – Finally, residential facilities for people with disabilities are being ‘X-rayed’. Families often speak of “‘forced’ choices” because families with non-self-sufficient people “are directed or are forced, against their will, to accept hospitalization in residential rehabilitation facilities for a series of reasons, for example because they are single parents or caregivers who are alone or because they lack home care compatible with an independent living plan”, we read in the Charter.
Then in these structures, however, “there are no conditions for a real individual rehabilitation program due to the abundance and heterogeneity of the groups to which the person with disabilities must necessarily adapt”, highlight the signatories of the Charter. In these centers there may be groups that for example have a “ratio between users and operators of up to 1 to 8 during the day or 1 to 16 at night”. And another element reported is “the absence of social projects”. Finally, the document addresses the issues of the use of sedatives, emotional continuity and infectious risk. And a list of points is proposed that would allow us to arrive at a new model of residential structures.
The first opportunity to talk about the themes of the document will be the presentation event of the book ‘No one is excluded’ by Fortunato Nicoletti (vice president of the association), which will be held at the Chamber of Deputies on Wednesday 8 November as part of the meeting ‘Disability . A family matter’, where representatives of the institutions will be present.
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