Disability: support for families is only possible if we work as a team

The tragedy in Pietralata has left us with words we cannot ignore: ‘We cannot do this on our own’. We do not know what happened inside that house, and it would be wrong to seek an explanation for what we do not yet know in a little girl’s disability. Those words, however, express the loneliness of families we know all too well at Serafico: the loneliness of those who face the daily challenge of caring for a child with a complex disability and find themselves shouldering alone a burden that ought to be shared.

And this is not a subjective perception, but a fact. It is the loneliness of those who, almost without realising it, end up seeing their identity entirely absorbed by care: no longer a person with a name and a desire, but merely ‘the mum of’ or ‘the dad of’—a full-time role that has quietly erased everything else. It is the loneliness of those who spend months chasing an assessment, of those who have to arrange days of hospitalisation or treatment whilst grappling with the limited resources of local health authorities. It is the loneliness of those who give up their jobs, studying healthcare protocols and school regulations at night. And not out of curiosity, but for survival. Because no one ever explained to her that, as well as being a mother, she would also have to become a nurse, a therapist and her own advocate.

The problem lies not in a lack of regulations, but in their implementation and the resources allocated to them. The ongoing disability reform introduces important principles: putting the individual at the centre, the Life Plan, and overcoming fragmentation. But any reform depends on the people who implement it and the resources that support it. Today, it is families who act as the link between organisations that do not ‘talk to one another’.

Then there is the dramatic and very real issue of actual resources. They are often in short supply, and even when they are available, there are no services in which to invest them. And even when services do exist, there is a lack of staff to run them, particularly in the field of rehabilitation. These are not isolated shortcomings: they are the weak link in a chain that breaks before it even reaches the family.

We must therefore emphasise the importance of working as a team — the public sector, the third sector and the accredited private sector — rather than treating them as separate, if not competing, spheres. Thinking in terms of silos means squandering precisely the capacity to respond that is most urgently needed. Without a genuine network, capable of planning together rather than merely exchanging expertise, the social and healthcare system is destined to crumble.