Children with PEG at school: a call for national regulations

Today we are talking about a topic that is very close to our hearts. We do not have accurate data, but more and more children and teenagers are fed artificially because they can’t be fed by mouth. We are talking about what in medical terms is called enteral nutrition and it consists of a tube that directly brings nourishment into the stomach or, in some cases, the intestine. This tube may be a nasogastric tube or more often a PEG (Percutaneous Endoscopic Gastrostomy), which enters the stomach directly through a hole in the abdomen.

When it’s time for a meal or to simply have some water, for many children it is a problem at school because there are no national rules for artificial nutrition and hydration.

The solutions adopted around Italy are different, but often we see that parents are forced to go to school to feed their children or that children are forced to go home to eat.

We also know that in many places things work. Schools, local authorities and health agencies have been able to solve this problem by guaranteeing to those who are artificially fed the opportunity to attend school without limitations.

We believe that authorities should agree on a protocol that defines, in respect of each individual case, the common basic rules that can guarantee artificial nutrition at school.

For this reason we wrote a letter to the Guarantor for Children and Adolescence, which we refer to below.

Subject: risks of violation of children’s rights resulting from the absence of national guidelines on artificial nutrition and hydration during school hours.

The organization “La Casa di Sabbia” was established by public deed on October 19, 2017 and has among its aims the protection of the rights and non-discrimination of families with disabled children. There have been reports from various families about the difficulty of the integration in nurseries and schools of all levels and sizes of artificially fed children, in particular through Percutaneous Endoscopic Gastrostomy (PEG);

These reports show a big picture of the hydration and nutrition of children during school hours. These modalities, in principle, include:

  • the administration of fluids and food by health personnel sent by local health authorities in full cooperation with educational institutions and local authorities;
  • the administration of liquids and food by support teachers, assistants to the autonomy of children, and other personnel provided by local authorities appropriately trained by a health company and / or by the family;
  • the administration by parents, family and volunteer staff;
  • the child goes home for the administration of the meal.

The full and unconditional right of all students with disabilities, whatever their degree of complexity, to attend schools of all levels has been repeatedly ratified by the Constitutional Court and puts Italy at the forefront in terms of school integration.

The methods of administration that provide for the intervention by the family or the return of the child home are not able to fully ensure children have the right to integrate in school. In particular, the intervention at school of a family member (in the vast majority of cases the mother) strongly impedes the woman (as well as finding and maintaining, an occupation), in further family commitments, especially in relations with the siblings of the disabled child, already particularly marked by the situation in the family.

As far as we know, there are no statistics on the children who are artificially fed at school. However there is a very good opportunity, for the competent Ministries and Regions, to prepare guidelines that specify the methods of administering liquids and meals during school hours to the kids that are fed artificially that attend schools of all levels.

In light of the above, we ask for the intervention of the Guarantor to signal to the Government and the Regions the need to adopt national guidelines on the matter, which we believe are necessary to guarantee the right to education for disabled children and respect for the family life of brothers and sisters.

It is also an opportunity to identify and disseminate the best practices on the matter existing on the national territory.

Best regards.

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We have also contacted some politicians who have told us that they will bring the matter to Parliament. We are monitoring everything and will give you updates.

We are also moving to affect regional governments.

We hope that all levels of government affected by the State responsible for education and guaranteeing the uniformity of rights at the national level, to the Regions responsible for the National Health Service and to the local authorities responsible for school assistance to get together to define these rules and guarantee everyone the right to education without discrimination.

We know it will be a long road, but we hope that for the next school year the matter will be solved.

If you are aware of Regions, Municipalities or individual schools where the question has been treated and resolved in a positive way, please let us know, obviously with due caution, since we are talking about the state of health of minors.

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Agnieszka

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