We would like to introduce you a subject that is very close to our hearts.
Even if in the absence of accurate data, we are aware that more and more children and teens are artificially fed, because they cannot feed themselves by mouth. It’s about enteral nutrition, which consists of a small tube that directly carries nourishment in the stomach or, in some cases, in the intestine. This tube can be a nose-gastric tube or more often a Percutaneous Endoscopic Gastrostomy (PEG), which enters directly into the stomach through a hole in the abdomen.
At school, mealtime or the moment of taking on water is a problem for these children and teens, because there are no national rules for artificial nutrition and hydration.
The solutions adopted around Italy are different: in many places, local authorities and health services have successfully managed this problem, by ensuring those who are artificially fed the opportunity to attend school without limitation. However, often parents are forced to go to school to feed their children or pupils have to return home during lunch.
We believe that it is important to put in place a national protocol that defines, in accordance with each individual case, common basic rules that could guarantee artificial nutrition at school.
That is why we have written a letter to the Child and Adolescent Guarantor in Italy that we report in full below.
Subject: Risks of the violation of children’s rights arising from the absence of national guidelines on nutrition and artificial hydration in school hours.
La Casa di Sabbia Association was formed by public act on 19 October 2017 and has among its purposes the protection of rights and non-discrimination of families with disabled children.
Several families have reported to us their difficulties in school integration in kindergarten nursery and schools of every order and degree for artificially fed children, in particular through Percutaneous Endoscopic Gastrostomy (PEG);
These reports gave a varied picture of how children are hydrated and fed during school hours, which include:
- Liquids and food administration by healthcare staff provided by health public service, in full cooperation with educational institutions and local authorities;
- Liquids and food administration by support teachers, autonomy assistants and other staff provided by local authorities properly trained by the health service and/or family;
- Administration by parents, family and volunteer staff;
- Child returns home for feeding.
The full and unconditional right of all pupils with disabilities, whatever the disability or the degree of complexity of the same, to the attendance in schools of every order and degree has been repeatedly enshrined by the Constitutional Court and puts Italy at the forefront of school integration.
The arrangements which imply the family intervention or the home feeding are not able to fully guarantee the right to school integration of children. In particular, the intervention at school of a family member (that in the vast majority of cases is the mother) strongly hinders the woman (in addition to find and maintain an occupation) in the further family commitments, particularly in relations with the siblings of the disabled child, already particularly marked by the family situation.
As far as we know, there are no statistics on children who are artificially fed at school, but there is a very strong opportunity for the relevant ministries and regions to set out guidelines. The latter should specify, in the case of attendance of schools of all order and degree of children artificially fed, the roles of the NHS, educational institutions and local authorities as well as the methods of administration of liquids and meals in school hours, while maintaining the need for personalization resulting from the specific pathology.
In light of the above, the Guarantor is asked to report to the Government and the Regions the need to adopt national guidelines on the subject, which in our opinion are necessary to guarantee the right to education of disabled children and respect of siblings’ family life.
It is also appropriate to identify and disseminate the best practices in this area at national level.
We have also contacted some politicians who have told us that they will bring the matter to Parliament through a Parliamentary Question. We are monitoring everything and will keep you posted.
Furthermore, we are involving regional governments.
We expect that all levels of government (the Ministry responsible for education and guaranteeing the uniformity of rights at national level, the regions responsible for the National Health Service, the local authorities responsible for the care schools) come together to define these rules and guarantee everyone the right to education without discrimination.
We know that it could take a long time, but we are confident that the issue will be defined for the next school year.
If you are aware of Regions, municipalities or individual schools where the issue has been dealt with and successfully resolved, please report it to us, obviously with due caution since we are talking about the state of health of minors.
Follow us to stay up to date.