- Envera serves 250 children with disabilities and their families each year.
- Judith Pérez is a psychologist at the Envera Early Intervention Center.
Madrid | March 23, 2022
The Spanish Society of Pediatric Palliative Care is organizing this week its V Congress PEDPAL Madrid 2022 and Envera is participating in the pre-congress with the contributions of professionals from its Early Intervention and Neurodevelopment Service, a reference center in the Community of Madrid.
For Ricardo Martino, president of the Congress Organizing Committee, "it is everyone's task to make society, public authorities, heads and health care managers aware that in Spain there are at least 25,000 children who require palliative care and more than 809% of them do not receive it".
In one of the meetings that have been held as a prelude to the Congress that will take place on March 24 and 25, Envera has contributed its vision on how to accompany and participate in pediatric palliative care from the Third Sector organizations.
Judith Pérez, a psychologist from Envera's Early Intervention Service with 20 years of experience working with children with disabilities and their families, presented Envera's contributions to the PEDPAL Congress.
For Judith, one of the main contributions provided by an Early Intervention Center (CAT) is to offer children in palliative care and their families a friendly and different space to the one they are used to, since they spend a lot of time in hospital environments or without leaving their homes: "Whenever there is the possibility of displacement, coming to a center like Envera's can have a very positive and enriching impact on their lives".
Among the main benefits provided by CATs, Envera highlights two fundamental aspects. On the one hand, families are provided with support and guidance in relation to the individual development of their children with the aim of making them aware of other needs beyond medical care and that this has an impact on a better family relationship. On the other hand, by coming to a CAT, the family and the child expand their support network, making them feel less isolated and more supported throughout the process.
For Perez, pediatric palliative care requires a great deal of coordination among the professionals involved, who must attend to the patient and his or her family equally.
professionals involved, who must attend to the patient and his or her family equally. Therefore, having a multidisciplinary team that works in a coordinated way to meet the needs that arise is a fundamental requirement.
In the case of Envera, they have stimulation treatments (always carried out by psychologists), speech therapy, physiotherapy and occupational therapy. All of them work with a program of individual objectives that seeks to promote the child's development and that adapts to the needs that arise. This intervention program is elaborated jointly and takes into account the family's concerns as a starting point. In all intervention sessions it is mandatory that one of the parents be present in the room, both to anticipate or solve any complications that may arise, as well as to provide security to the child, learn techniques that can be generalized in their homes and form a compact working block between the family and the CAT to help make the process more positive.

It should also be noted that any professional involved in the care of children in palliative care from a therapeutic setting must have rigorous coordination with the medical team handling the case.
From Envera's CAT "we miss essential and first-hand medical information both in the moments before the child starts the intervention and during the time of treatment. We therapists need to receive information about the child not only from the families, but also from professionals who know the child's medical history and know what the child's progression will be. Only they will know how to answer all the questions we have and will help us to attend to each child properly," says Judith.
Another of the difficulties pointed out by the CATs of the Community of Madrid when attending children in palliative care is the impossibility of their professionals to go to the homes to offer treatments. An aspect that is not contemplated in the framework agreement that regulates early intervention, which "represents an important limitation since, due to the child's health, families do not always have the opportunity to go to a center or to do so with the necessary frequency. This situation means that they cannot count on us as a resource or that we end up offering intermittent support, in which case the benefits will always be less".
Therefore, professionals ask for "greater flexibility on the part of the Administration and to consider the possibility of approaching each case that arrives at a CAT taking into account the circumstances of each child".
Another of the demands that are regularly repeated is the lack of specialized training and of adequate material resources and technical aids to comprehensively address all the needs that arise in the case of pediatric palliative care.
For more than 30 years, Envera has been offering early attention treatments to children from 0 to 6 years of age who present developmental disorders, or are at risk of suffering them, with the aim of detecting and responding to their needs as soon as possible. This social entity has also set up the Neurodevelopmental Service for Children and Young People, aimed at children and young people from 6 to 18 years of age who have been discharged from early intervention programs due to age criteria and continue to require specialized care.

In total, Envera serves 250 children and their families each year thanks to the specialized work of a multidisciplinary team that aims to help children and young people so that they can have an equal opportunity to take their place in society with dignity.