Pedagogical Home Care Actions: Possibilities and Challenges

ABSTRACT

This study proposes the description and analysis of possibilities and challenges in the work with students with disabilities from the Pedagogical Home Care in the city of Santos, state of São Paulo, Brazil, according to the teachers' point of view. For that, we chose a qualitative methodology and a semi-structured interview with teachers who work in this context. Eight female teachers from the Pedagogical Home Care participated; they had more than one year of experience at the job and worked with children and adolescents with disabilities. Data analysis allowed the understanding of meanings, values and attitudes that correspond to the processes of reality. The specific literature, official documents on Inclusive Education, Hospital Classes and Pedagogical Home Care guided this research and made possible the legislation support. The results indicate that it is essential to think about the role and (re)significance of the teacher's role in this process. The plurality of knowledge and the articulation of education and health emerge as a fundamental aspect for a collective construction that favors the teaching performance. Another relevant aspect was the reflection on the re-signification of the teaching profession in the home environment, collaborating with the elaboration of proposals for more effective actions in the work with the Pedagogical Home Care students, as well as the possibility of extending this practice to other situations within the school scope, and the guarantee of effective schooling outside the "school walls" for other municipalities.

KEYWORDS:
Special Education; Health teaching; Pedagogical Home Care; Inclusion; Inclusive education

RESUMO

Este estudo propõe a descrição e a análise das possibilidades e dos desafios na atuação com estudantes com deficiência inseridos no Atendimento Pedagógico Domiciliar, na cidade de Santos, estado de São Paulo, de acordo com a visão dos professores. Para tanto, optou-se pela metodologia qualitativa com a realização de entrevista semiestruturada com professoras que trabalham nesse contexto. Participaram oito professoras do Atendimento Pedagógico Domiciliar, com experiência superior a um ano no serviço e que atuam com crianças e adolescentes com deficiência. A análise dos dados permitiu a compreensão de significados, valores e atitudes que correspondem a processos da realidade. Literatura específica, documentos oficiais sobre Educação Inclusiva, Classes Hospitalares e Atendimento Pedagógico Domiciliar nortearam esta pesquisa e possibilitaram o amparo na legislação. Os resultados sinalizam ser imprescindível pensar na função e na (re)significação do papel do professor nesse processo. A pluralidade de saberes e a articulação da educação com a saúde despontam como fundamentais para uma construção coletiva que favoreça a atuação docente. Outro aspecto relevante foi a reflexão sobre a ressignificação do fazer docente no ambiente domiciliar, colaborando com a elaboração de propostas de ações mais eficazes na atuação com os alunos do Atendimento Pedagógico Domiciliar, assim como na possibilidade de estender essa prática para outras situações no âmbito escolar e a garantia da efetiva escolarização fora dos "muros da escola" para outros municípios.

PALAVRAS-CHAVE:
Educação Especial; Ensino em Saúde; Atendimento Pedagógico Domiciliar; Inclusão; Educação Inclusiva

1 Introduction

The legal guidelines recognize and validate the need for educational care for children and adolescents in prolonged health care and/or hospitalization. This study aims to clarify and make visible the offer of this type of education, so it presents some knowns and, unknowns, acknowledgments or misunderstandings about respect and appreciation of the uniqueness of the subjects, especially children and adolescents with disabilities, that prevent them from attending school.

As described by Albertoni, Goulart and Chiari (2011), Ceccim (1999, 2010), Fonseca (2008, 2015), Fonseca and Ceccim (1999), the sick and/or hospitalized child, regardless of the length of stay in the hospital or at home and of the nature of the illness, has the right to schooling guaranteed by the 1988 Brazilian Constitution and by the norms that are specifically dedicated to hospitalized and/or ill children.

From this perspective of education, the discussion expands beyond the school walls, promoting a dialog with other areas in order to think about the human being as a whole. It is intended to arouse interest in this topic, for the realization of this right, favoring the intersectoral articulation in the norms that regulate the Pedagogical Home Care.

Ainscow (2009, 2017) points out that the teacher's enactment outside the "school walls" is a challenge, since vocational training is still incipient to provide experiences in learning situations and in different places from traditional classrooms in regular schools. The author points out about the teacher's awareness of constantly learning, assuming the role as a researcher and investigator of new ways of teaching and reflecting on his/her work. Ainscow (2009, 2017) complements by mentioning the need for the involvement of several professionals in a joint work for school and teacher development, stressing that when there is commitment and leadership within the school, teachers find time and space for problem solving, in addition to reducing barriers that prevent everyone from participating.

Leon and Miranda (2011) state that, although Pedagogy has as one of its aspects the construction of knowledge from the teaching-learning process in the school environment, in situations where the teacher's enactment occurs in different contexts, as in the Hospital Classes or in the Pedagogical Home Care, it is necessary that the professional exceeds the educational expectations and appropriates him/herself of the student's health condition, diagnosis, interventions, treatments to suit his/her proposals, requests, always respecting the clinical conditions and limitations of the student. Fontes (2005) corroborates this idea and proposes a (re)conceptualization of the child condition, defining the teacher's role in this context as a bridge between the child's daily life and the hospital/home world, which assumes relevant proportions in the search for understanding the process of elaboration of the disease and of a possible death.

To understand the context in which this research was conducted, we present the municipality investigated in this study. The research took place in the city of Santos, located on the coast of São Paulo State, Brazil, with a total area of ​​280.3 km². It is located 72 km from the state capital, constituting the largest city on the coast of São Paulo. It has approximately 434 thousand inhabitants, subdivided into its 69 neighborhoods: 58 neighborhoods in the island part and 11 in the continental area.

In 2008, the Santos Department of Education (known as SEDUC - Secretaria de Educação de Santos), considering articles 205 and 214 of the 1988 Federal Constitution, articles 5 and 23 of the National Education Guidelines and Framework Law no. 9,394/1996, the National Guidelines for Special Education in Basic Education (2001), the document Hospital Class and Home Pedagogical Care: strategies and guidelines (Classe hospitalar e atendimento pedagógico domiciliar: estratégias e orientações, 2002) and Article 24 of the Convention on the Rights of Persons with Disabilities, established the Guidelines to standardize Home Pedagogical Care, set forth in Municipal Ordinance no. 109/2008. The Home Pedagogical Care Program (Ordinance no. 109, December 2008) is intended to enable the schooling of students unable to attend classes for health reasons, which implies the prolonged stay at home or in the case of students presenting serious disabilities that prevent them from going to school. The number and permanence of students in this program are constantly changing, whether due to the return of some students to the school environment, the indication and initiation of new care, or death.

Requests for students to enter this service occur in two ways: they are sent by the Municipal Education Units in which students are enrolled or are requested by parents and/or guardians in the public service provided by the Special Education Section (Seção de Educação Especial - SEDESP) at SEDUC of Santos. If the child is not yet enrolled in a Municipal Education Unit, the enrollment is provided for the continuity of the process.

Having verified the medical report and the medical request for the pedagogical care at home, an initial visit is scheduled to the student at his/her residence. In this first contact, a SEDESP team conducts observations, initial surveys, guidance on the organization of Home Teaching Care. The perceptions, possibilities and challenges perceived in this initial meeting are relevant to orientations given to the school and teachers about the time and the differentiated forms of care.

After the first contact, a period of registration and assignment of the project opens for teachers from the Municipal Teaching Network of Santos who are interested in working in the Pedagogical Home Care Program. This procedure occurs, when needed, throughout the school year. The interested teacher receives guidance about the program and the specificities of the student. A SEDESP team shares with the new teachers successful experiences and strategies used in other cases, warning about the importance of approximations and interactions with other students in the classroom, through specific activity at school when possible, through notes, videos, or being able to watch an explanation that the senior teacher is presenting about content via webcam or a mobile phone footage.

Then, a meeting is requested to be scheduled between the Home Teaching Care teacher, the class teacher, the Specialized Educational Service teacher (SES) and Municipal Education Unit members where the student is enrolled. This meeting discusses the procedures arranged with the family, the possibilities of working hours respecting the medical guidelines, the need to communicate with the school in case of eventualities that prevent class from happening depending on the day, the management of support material to be used by the teacher, among other issues that vary from case to case.

The Home Teaching Care teacher is instructed to attend the Municipal Education Unit daily in order to meet administrative demands, meet the classroom teacher and make use of the activities being proposed for the class. At school, teachers share experiences, answer questions, and the Home Pedagogical Teacher conducts activities adjustments, when necessary.

It is important to note that in many situations it is difficult to put in place a rigid curriculum, as there is a constant need for flexibility and curriculum adaptations. The days may be very different from each other and the professional needs to make adjustments, and sometimes face the impossibility of care due to the clinical instability of the student. Fonseca (2008) also stresses the need for the teacher to be prepared to deal with the student's subjective references, reinforcing the importance of dexterity and discernment to work with flexible plans and programs, constantly reoriented by each student's special and individual situation.

The teachers, as well as the school management team, are oriented on the articulation with the health team that accompanies the student in order to exchange knowledge and be aware of any new possibilities and approaches. Health professionals who serve children vary widely and come from different services, such as rehabilitation centers, hospitals, public, private or philanthropic clinics, both in the same municipality and in other cities.

In the case of medical discharge, the student gradually returns to the activities in the school environment and usually opts for a period of continuity of the teacher of Home Pedagogical Care in the school environment, so that everyone has greater security until this monitoring passes to be unnecessary.

In this context, this study aimed to understand the possibilities and challenges in the construction of inclusive pedagogical practices by teachers who work with children and adolescents with disabilities in Home Teaching Care in the city of Santos, Brazil.

2 Method

With an exploratory approach on a topic still little discussed academically, this study values the search for meaning and interpretation, aiming to generate improvement and knowledge applied to new contexts. Minayo (2014) points out that qualitative research answers very particular questions and works with the universe of meanings, motives, aspirations, beliefs, values and attitudes, which corresponds to a deeper space of relationships, processes and phenomena. The research strategy chosen was the semi-structured interview, which, in qualitative research, reveals itself as a tool of important value.

2.1 Research participants

The participants of this investigation were teachers from the Municipal Education Network of Santos, active in the program in 2017. During the period investigated, 22 students were part of the Home Pedagogical Care Program and 16 teachers developed activities with these students. Some teachers served more than one student in their weekly workload. This varies according to the time adjustments proposed by the clinical report of each case, analysis and planning of the SEDESP team along with the families and the teachers.

Of the 22 students, 18 had some type of disability, such as Duchene Muscular Dystrophy, Neuromuscular Disorder with Severe Myopathy, Rett Syndrome and Prader Willi Syndrome. The other 4 students had no disabilities, but some health problems, such as being in the postoperative period or undergoing chemotherapy follow-up.

The inclusion criteria for teachers' participation in the research were: to be working for at least one year in Home Pedagogical Care with children or adolescents with disabilities. The researchers' choice for teachers who worked with students with disabilities considered that they require different approaches and strategies for teaching and learning situations, besides staying longer in this educational modality.

Eight teachers participated in the research, all of them female, aged between 32 and 50 years old. All had a degree, and six of them concluded a lato sensu graduate program. All had more than ten years of experience in teaching and the experience in Home Pedagogical Care in the Municipality of Santos ranged from one to five years.

2.2 Ethical issues

The study project was presented to SEDUC and, after authorization, submitted to the Research Ethics Committee of the Federal University of São Paulo, approved in accordance with Opinion no. 1.903.822 and Research Ethics Committee 0005/2017. For ethical reasons, the identity of the participants will be preserved, and the teachers will be identified in the notes of this study as P1, P2, P3, P4, P5, P6, P7 and P8.

2.3 Data collection procedure

The interviews took place between May and August 2017, and were scheduled and conducted according to the participant's schedule. Thus, five teachers were interviewed at the Municipal Teaching Units where their students were enrolled; two teachers opted for the interview in the SEDUC meeting room; and one requested realization at her home because she was still recovering from flu and pharyngitis.

For the interviews that were conducted in schools, a room was made available to enable dialog, with little outside noise interference, ensuring privacy and recording quality. The interviews lasted an average of 35 minutes and, with due permission, were recorded, literally transcribed, and their contents analyzed for their convergence, divergence and tendencies.

2.4 Data analysis and interpretation

After listening, transcription of the recorded material and the interviews printed, the material was first read, impregnated by its content, seeking an overall view and apprehending the particularities. In another step, new readings were made for more detailed exploration, valuing the perception of going beyond the statements and facts, of what was implied. In another moment of reading the reports, important observations were noted, relevant questions, indications of compatibility or not with the reviewed text. An interpretative synthesis was elaborated in order to dialogue with the themes, objectives and assumptions of the study.

The exhaustive reading of the selected material, according to Minayo (2014), facilitates a deep understanding of the text and allows a view of the set with perception of particularities of the analyzed material. With the organization of the reports, it was already possible to start a classification by topics. Based on this framework of analysis assembled by topics, excerpts from the testimonies were cut and implicit and explicit ideas were identified in them.

Following the initial analysis, new readings provided different clusters, and new units of meaning were established in an attempt to understand and interpret what was exposed as more relevant and representative by the group studied. From the speech analysis of the interviewees, aspects understood as thematic axes that guided the main categories of analysis were emphasized.

3 Results and discussion

The results will be presented and discussed from the specific literature, the teachers' perceptions about the proposed questions and the reflection on practices from a mixed look of those who follow up care and research at the same time. It is worth mentioning that these data are part of a Master's research and that the results obtained by the interviews will be presented and discussed here, according to two thematic categories: 3.1 - A broader view: the teacher as a (trans)formative and transformed agent into his/her enactment in Home Pedagogical Care and 3.2 - Education and health articulation: knowledge under construction potentializing professionals.

3.1 A broader view: the teacher as a (trans)formative and transformed agent in his/her action in home pedagogical care

Education is not an exclusive element of the school. Silva (2009) mentions that children and adolescents, considered learning subjects, when unable to attend school cannot be left out of the "school context". In this sense, Fonseca (2015) argues that, even in the face of adversity, children hospitalized or unable to attend school have an interest and academic competence. Thus, the schooling process, even at home, contributes to the awareness, development and emotional fulfillment of children with poor health.

Reflecting on learning possibilities for all, Fonseca (2015) considers that, for the sick or disabled child, studying constitutes a good for the healthy child. Thus, Home Pedagogical Care brings the child closer to the social experiences that he/she misses when unable to attend school, giving back the maintenance of the links with social life and restoring the bonds of a common life, supposedly lost. Next, there is an excerpt that praises the student's anxiety about the moments of class that, despite the clinical difficulties, are considered immensely productive:

He waits for me on the balcony of his apartment. When I enter the street, I already see him sitting, waiting for me. He knows the days I go and the time. So, today, he has a desire to learn. (P3).

This excerpt, among so many testimonials analyzed, confirms that the students inserted in the Home Pedagogical Care show growing interest and willingness to learn at every meeting, in order to collaborate with increasingly significant results in the teaching-learning process.

The lack of "ready-made models" for Home Pedagogical Care expands the teachers' doubts and questions as they approach the project. The teachers' statements point out that the lack of knowledge about the student's health status, the new environment of work in a home context and the resources that will be available to use cause great discomfort and insecurity.

I got to her house like that, pretty scared! Really worried! In what way should I do that? How to do it? It is one thing to be in the classroom, with a student, a blackboard, with books, with a projector or in a computer room, with a computer (...). So you don't know what you are going to face and then you have to put it in your head that you are going to work with what you actually have. What do you have to work with? Got a computer? It's great, cool! Got physical space? Is it adequate? Is there any noise? There are several factors that influence when you are going to teach in a student's house, right? Totally different from what you see in the classroom. I was very scared. I was! I confess that I was. (P6).

When it comes to differentiated care, situations may require studies, research, attitudes, decisions and actions sometimes never experienced in the school routine. In this context, teacher and student tend to find out how the work will be done. Gradually, the teacher delimits the process, setting new goals and increasingly relying on the support and collaboration of the student and family.

Teacher P4's testimony illustrates the need for a differentiated look during the initial contact with the student.

First step I put in my head is that I had to have the student's confidence. He had to accept me, we had to bond, establish a bond. Of all the strategies you have, if you have no bond, you get nothing. The work does not flow. So, my first step was to establish a bond. Early on, I spent a week teaching his forehead because he wouldn't raise his head to me. But I persisted. I persisted, persisted and gradually it was happening. Of course, one of the characteristics of the syndrome is also resistance. I had to be patient enough to get something back. And that was the beginning of the process. After a while, he started to feel safer and he started trusting me. He saw that we were there to grow together and then things started getting on track. Then other thoughts came ... ha ... What strategies would I use to achieve progress? What was my mission there? How to literate him? (P4).

Fonseca and Ceccin (1999) reinforce that, for teachers who work in different contexts and with students with health problems, there is still the challenge of dealing with impacting realities. Teachers do not always adapt to work in the home environment. Sometimes they do not adjust to close contact with family; other times, they find it difficult to deal emotionally with such fragile students and make the necessary curriculum adaptations. The difficulty may involve the relationship between family, student and teacher.

About concerns arising from acting outside school spaces, another point that causes some strangeness to the teacher refers to the proposed contents and the necessary and evident curriculum adaptations for some students of Home Teaching Care. Amaro (2009) considers that realizing these curricular adaptations is a great challenge, requiring study, research and professional mobilization. In the scenario of this study, it is observed that the sharing and collaboration between teachers working in the Municipal Education Unit, teachers of SES and Management Team tend to be enlightening and assertive. The following report highlights the benefits of guidance with the Special Education team.

But when I arrived and met the child, I realized his limitations. It was a big challenge! And I jumped in headfirst! But, you know, all the guidelines helped me for the initial moment ... And that challenge thing came up and I went on ... ha ... (P7).

The pre-established health condition in the students mobilizes a new professional positioning of the teachers. The search for knowledge to provide better and possible conditions for teaching and learning overcomes the paralysis and depotentialization that remain in some teachers who work in the school for long periods, when they receive students with disabilities in their classes.

In the home context, the teacher, in addition to the function of teaching for knowledge of disciplinary and curricular contents, can provide situations and activities that lead to increased self-esteem, improved communication, logical thinking, citizenship, among other factors. The teacher's performance at home depends on his/her education, profile, desire to teach in different ways, curiosity, zest for research and flexibility in his/her actions. Fonseca (2015) reinforces that, normally, by perceiving the situation of students' vulnerability, the teacher intends to make them know and understand the world in a pleasant way.

Fontes (2005) points out that pedagogical intentionality transforms the different activities proposed by the teacher, even a joke, into an action to be learned. There are several situations proposed by the teachers in order to build that bond with the students and, later, to the construction of a routine of activities. The following statement brings Professor P5's thoughts on this approach:

He is like this all the time trying to feel things. So I've used sandpaper, towels, balls, that corrugated cardboard, everything for him to make noise, he loves to make noise! For everything I want to do in teaching, I do what he wants to feel so that he can have tactile perception. I am so happy because I see that he is giving more responses. In the beginning, I had no response. (P5).

The author points out that the teacher needs attention, caution and ability to deal with moments of emotional instability and adverse clinical conditions of students at home. Understanding, comprehending and respecting students' limits while remaining in the role of teacher is also a challenge. In some occasions, it is necessary to redesign actions and activities due to unforeseen daily life. Teacher P2's report illustrates the teacher's perception of acting with assertiveness and caution:

If I give him something to write or do a little more Math activity, because I realized it was flowing and go on for a bit more, he says: - My hand hurts! Then we stop for a while. I change activity. I continue with activities that he does not need to write, just oral or a video that I have selected to watch. I try to diversify if I see that he is tired. If he stretches his arms too much, pauses a little, or takes a breath, I already know he's tired. (P2).

Ainscow (2017) reports that producing care and singularized care are challenges, considering the busy lives of teachers and often with excessive workload, aiming at a better financial condition. Despite this factor, the practical experience brings the teachers of Home Pedagogical Care a careful attention to the signs shown by students of comfort or discomfort, realizing, this way, the need for redesigning, reordering of new actions, activities and strategies.

I have to understand that he can't write... So I had to research a lot of resources in order to make the classes pleasurable and attractive to him. (P3).

I am working on these activities because they are well elaborated activities with large letters. The literary text of the digital platform is simpler to interpret, which makes it easier, right. [...]. I can work with J. both types of activities. (P6).

As stated by Fonseca (2015), the right of education of children or adolescents with a health problem, although not a new issue, causes a great deal of strangeness in society. After the experience and the initial discomfort, some teachers are excited by the results they are having from the students and bring this enchantment in their reports.

In Home Care I have been with the same student for four years. It was a big challenge at first because I had no practice working with people with disabilities and I started this kind of work from scratch ... I started and I'm getting some results! (P4).

Fonseca (2015) reinforces that the teacher who works in home or hospital environments needs to invest in the students' potential, stimulating the school activities in a creative way and adjusted to the reality, interests and needs of each student. It is a new way of teaching, as confirmed by the reports of some teachers.

I think this work is wonderful! I have some new ideas every day. Our mind works and sometimes you are in the middle of the street thinking about how to do that ... And the possibilities are many. (P1).

Most teachers show that they like and are interested in remaining in this job, not because of the ease in the process, but because they believe, recognize the intensity, the transcendence to the formal school system and are effectively collaborating with better conditions and opportunities for students. Reinforcing this aspect, the following report is presented:

G. is very smart. Sometimes he corrects me. I look like this ... Oh boy! Ha. It's impressive! Sometimes he is more attentive in class than myself. So that's what I think is really cool. So you're going to work in rain, in sun ... You go because you know that, at the end of the class, you're going to be satisfied. It's cool! (P1).

The dynamics advocated in the Home Pedagogical Care guidelines in the municipality of Santos happen accordingly with some Municipal Education Units. Sometimes, it is noticed a great commitment of the home care teacher in articulation with the Management Team and other teachers. The importance, the necessity and the benefits of the sensitization work with the school community of which the child is part is emphasized. Therefore, the attitude of the teacher and the involvement of other professionals and children of the school become the differential, as pointed out by teacher P4's testimony.

Before we took him to school, we made a Skype video conference and my student saw his class friends. This opened a new possibility. For me that was awesome, because he realized there was another world outside that room. He was beginning to be enchanted with that world. (P4).

When we first went to school it was really cool. The kids already knew who L. was. I had already taken a picture, they already knew that he used a wheelchair, that he was very chubby, you know? I used this term because it's the way they really talk ... And I told my classmates that he was really cute ... You will see. He's very cute ... So the kids in the room were prepared. (P4).

The articulation with the school must be constant; after all, there is a pedagogical proposal directed to the class of this student that, in some cases, depending on the reason of his absence from the school environment, cannot be so different from the proposals developed at home, since the student's health situation may change and enable the return or start of school attendance. Therefore, as required by law, Home Teaching Care should continue the development and learning process of students enrolled in Basic Education schools, contributing to their return and reintegration into the school group (Classe hospitalar e atendimento pedagógico domiciliar: estratégias e orientações, 2002).

The need for frequent orientations and meetings to discuss cases among professionals working in the home context are evident and enable a greater understanding of the dynamics and operation of this service.

3.2 education and health articulation: knowledge under construction potentializing professionals

In this category, we discuss the interrelations between the fields of Health and Education, which happen indirectly, and which, in this paper, are pointed out as extremely relevant by the interviewed researchers and teachers; however, they are not always easily viable.

The municipality has Specialized Educational Service in its Education Units. In the period in which the research was developed, in addition to municipal health equipment that performed diagnosis, the City Hall also had an agreement with entities that provided specialized educational services when necessary and health for both diagnosis and for specific habilitation and rehabilitation services. It should also be added that some students of the Home Pedagogical Care program attended specific health services not insured by the City Hall, including those from other cities. Such a reality sometimes made it difficult to carry out intersectoral actions.

About the Education and Health interface, Inojosa (2001) explains that the intersectoriality promotes the exit from the comfort zone, creating a complex environment, where professionals are faced with a knowledge which is not assimilated. Ide, Yamamoto and Silva (2011), Jurdi, Brunello and Honda (2004), Rocha (2007), Rocha, Luiz and Zulian (2003) corroborate proposing to be a place of knowledge that can bring discomfort to professionals not prepared for new learning. From another perspective, intersectoral action brings the challenge and the possibility of actions and resolution of complex problems, provided that there is cooperation and commitment to it.

Although the National Policy of Special Education in the Inclusive Education Perspective recommends the articulation between Education and Health services to meet the differentiated educational needs, this fact still occurs timidly. According to Silva, Molero and Roman (2016), what is generally experienced in these relationships narrows down to questions and answers in which difficulties in daily school life are converted into individual diagnoses or pathological conditions that would be solved with health support, without any restructuring of pedagogical proposals.

Some teachers report that, in addition to individual research, they make efforts to contact the health professionals who accompany the student. Sometimes, when this service is performed in a rehabilitation institution, they already articulate with the family the scheduling of this conversation, as illustrated by this statement of teacher P3:

I made this search. I spoke to the person in charge: "How can I arrange an appointment with some professionals who attend R.?" He told me to stop by the clinic and try to talk to the pedagogue. I managed to schedule a time for a meeting, where the other professionals were present. It was my own initiative. I wanted to understand how I should work with this student because I was pretty scared. (P3).

In order to overcome difficulties and overcome challenges and barriers, it is necessary to rethink values, truths and the homogeneity that the traditional school brings, Ferreira (2007) points out, and to think about children, focusing on their skills and not disabilities, with the incorporation of concepts such as interdisciplinarity, awareness and sensitization. The author points out that teachers need to be instrumentalized to meet the peculiarities of the students according to their individualities and need to assume the students without delegating the educational work to other professionals.

It is important to highlight that some teachers present and use the doubts about the limits, conditions and possibilities of the students as propelling tools to initiate contact with the multidisciplinary team, in order to think about new acting strategies. This need was mentioned by teacher P4 in the following statement:

If I had at least one Psychologist, a Speech therapist, because at first my desperation was to understand L., because I couldn't understand what he was talking about. The speech really improved. It was totally childish. His father and mother made the whole communication for him. They wouldn't let my student talk. But it wasn't because they controlled him. It was because they were used to it. This was a behavior that I had to intervene and change their behavior as well. Even today it still happens. I repeat: - Let L. talk quietly! And he starts talking ... So this fact was very natural for them. I think if I had had contact with the Speech therapist, with a Psychologist we could have managed more results. (P4).

In the statements, it is clear that the Home Pedagogical Care is not contemplated with a policy that guarantees the possibility of intersectoral actions between the departments of Education and Health to assume a joint construction of action for the students. However, the dynamics of care resize concepts related to space, time and ways of learning, in a broad search for the construction of assertive intervention strategies. It is noticed that the opportunity to know situations practiced in other services potentiates the teacher by appropriating what is possible to propose to the student in the initial moment.

There was also an approach with the Association for Children with Disability Team where an alternative service was presented. Work on eye enhancement for accurate answers. The guidance was given by the Occupational Therapist and the Speech Therapist. (P8).

From the experience in the project follow-up, in the conception of the researchers, the listening of reports, by the teachers, about the articulation with the health team professionals sounds, sometimes, like an unveiling to the eyes, just like the discovery of light at the end of the tunnel. The teachers show another physiognomy and a certain lightness in knowing and appropriating the capacities and possibilities of the students they, sometimes, were not aware of. This new perspective strengthens the pedagogical performance, and favors the convincing of families to allow the execution of new activities, the imposition of limits for inappropriate behaviors and tantrums, among other actions.

In relation to the Health and Education interface, Silva, Molero and Roman (2016) report that teachers mention the desire to learn about the clinical conditions of students, in order to know the difficulties, socio-emotional and psychomotor development, potentialities, limitations, aiming at the adequacy of methods, materials and contents in the pedagogical field. The authors add the perception in teachers' statements of the possibility of certification and validation of what is being done with the student, seeking support and endorsement regarding their practice.

Other times, the relationship with other professionals may be fragmented, not constituting an integrated work. Fontes (2005) states that, because the practice is centered on the disease, some health professionals continue to have the view that the child is the disease and, in taking care of the disease, they feel as if they were healing the child. In this respect, the teacher's role is characterized by the possibility of bringing education to all moments, taking advantage of various opportunities, motives or events in the student's routine. The teacher re-signifies the space, the time, the ways of learning and events for children and adolescents inserted in the Pedagogical Home Care. Despite the need for this broader view of all professionals, this does not always happen, as illustrated by Professor P5's statement:

The doctor I have contact with, only observes if he's ok, measuring his head which is macro. I would like to talk more ... To have contact with the Speech Therapist, with the Physical Therapist because sometimes we can exchange ideas, right? (P5).

In general, the reports of the teachers in the interviews give the impression that medical or health knowledge is more valued, although there is no perception and appreciation of details and small communication signals that evident in the teachers' conception.

Gradually, some teachers risk applying new activities, demanding better school posture and fulfillment of what was agreed. Schooling refers to a work routine that, as far as possible, is also proposed at home. Throughout the care, the bonds are progressively strengthened, as well as the understanding of gestures, postures, reactions and other signs that punctuate participation and enjoyment of learning.

The teachers who reached greater contact with professionals of the multidisciplinary team report that they were able to develop diversified strategies for the schooling of the students they attended. Based on initial ideas and what they witnessed, they developed other adapted materials that contemplated new learning moments. They often mention compliments and have their practices and materials used in clinical care situations with the multiprofessional team.

Fonseca (2008) argues that it is essential to think of the classroom at home as a space for encounters, transformations and development possibilities. The author further states that education and health should go hand in hand and seek qualitative solutions for the learning of hospitalized students or those unable to attend school due to health issues. The vision should be complementary to the common goal of student development. This thought is illustrated in the following statements of teachers P4 and P6:

The multiprofessional team is crucial because there is no professional who knows everything. Each one has a view from a particular aspect and together you can contemplate even more. (P4).

The Occupational Therapist was the one that helped me the most in the pedagogical part. She gave me orientation regarding posture, guided me about the pencil handling. For me, it was something new to work with every motor difficulty that the student had. She helped me a lot ... The student couldn't keep her head down, couldn't turn her head to one side. She oriented me on the best side for me to sit. Then, she helped me in other practices as well. She worked a lot on reading ... she organized a diary with J. I had her contact and would ask orientation: 'How should I do it? What do you think about doing such a thing?' For example, we made a picture. We painted a canvas and I asked the Occupational Therapist how we could do that. If it was advisable for her. I was told that the student could not keep her head down, to put something that was higher for her ... The brush has to be thicker. So, some things I helped and some things she did on her own. It was a long process to have the job done. (P6).

As stated by the teachers, often relying on the help of other professionals is enlightening and enriching for the process and, although guaranteed by legislation, little happens at the school and/or home level, which also does not seem to be guaranteed in the group of actions proposed by the municipality where the research was conducted. The importance of the discussed approach between Health and Education institutions is not recent. Increasingly, learning possibilities are becoming evident so that both contribute to effective actions in the schooling process of children and adolescents with health problems that prevent them from attending school in a conventional way.

4 Final considerations

This research allowed us to understand how the process of schooling of children and adolescents with severe disabilities that are part of a Home Pedagogical Care program in a city of the coast of São Paulo, Brazil, has been taking place, so that they have the rights to learn guaranteed. The experiences of the teachers presented here bring successful results, as well as challenges to be overcome for the continuity of the schooling process, the improvement of the professional performance, the overcoming of the fragmentation of knowledge and the development of different pedagogical strategies, also resulting from intersectoral actions between Education and Health.

In addition, although advocated for nearly two decades in legislation, the search for other related experiences of programs and municipalities that offer home schooling inclusive strategies has shown that such initiatives are still scarce, and that some professionals, many times, walk alone in search of better effective pedagogical and attitudinal practices that promote more inclusive actions.

In this sense, it is also worth mentioning that throughout the research, bibliographic searches were performed in different national and international databases, and with different descriptors; however, little has been found on the subject in question, which demonstrates that this study provides unprecedented knowledge for the field of special and inclusive education in the context of home teaching care.

It is important that Home Pedagogical Care, as an educational modality guaranteed by law, can (re)signify spaces, time and forms of learning through collaborative actions mediated by family, teachers and health professionals. It is essential that health care does not neglect care with schooling, and vice versa. They need to be together in an increasingly articulated, meaningful, effective and consistent relationship of collective construction and integral care.

Given the discussion presented, it can be stated that this research brings relevant contributions to the advancement of education of people with severe disabilities at home, but the universalization of this right still represents a challenge to be thought, discussed, implemented and improved every day. We expect this study contributes with discussions, research and practices on Home Pedagogical Care, in order to enable new forms of action and the development of new studies.

It is intended that the differentiated character of this theme and this study mobilizes teachers and managers of education and health in the interest and motivation to understand and comprehend in depth the unique dynamics of Home Pedagogical Care. It is appropriate to reflect on their daily lives, envisioning professional improvement that will directly impact on benefits for students, on collective construction of proposals for assertive interventions with students with severe disabilities in different spaces of schooling.

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Publication Dates

• Publication in this collection
  25 Nov 2019
• Date of issue
  Oct-Dec 2019

History

• Received
  31 May 2019
• Reviewed
  11 Aug 2019
• Accepted
  12 Aug 2019