An unprecedented survey in Rio de Janeiro found that most children with multiple disabilities due to the congenital zika virus syndrome do not attend schools in Baixada Fluminense. In addition to socioeconomic and locomotion difficulties, remote teaching has kept children away from early childhood education during the pandemic.
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The project by researcher Márcia Denise Pletsch, from the Multidisciplinary Institute of the Federal Rural University of Rio de Janeiro (IM/UFRRJ), investigates the importance of schooling in the development of these children since 2018. With this, it aims to expand access to inclusive education with actions on several fronts.
Initiated during the government of Jair Bolsonaro (PL), the research soon came across the lack or total absence of updated information from the Ministry of Health on the syndrome. The group then resorted to the database of the municipal departments of social assistance and health to carry out a reliable survey that was closer to the local reality.
“During the previous federal government, several databases stopped being fed, one of them was the Epidemiological Bulletin where we had updates on the congenital zika virus syndrome, affected mothers, confirmed cases, under evaluation. The most reliable data at that time Brazil’s history is the basis. There is a big difference between federal data and that which local managers have”, says Professor Márcia Pletsch.
In this context, the coordinator of the research group at the Observatory for Special Education and Educational Inclusion (ObEE/UFRRJ) considers that the scenario could be even worse. “To give you an idea, there are municipalities in which social assistance had 54 children (with zika syndrome) on the register and only two were enrolled in school”, she exemplifies.
The first stage of the research followed the routine of families, primarily made up of women. Pletsch, who has been working in the area of inclusive education for 25 years, explains that historically the issue of disability in Brazil has been permeated by factors such as gender and race, a situation that is repeated in the case of disabilities caused by the zika virus.
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“The predominance is of single women, and here in the Baixada we cannot forget the dimensions of race and class either. They are black women, totally socially vulnerable, poor and alone to take care of this child and the other children”, points out the teacher at UFRJ.
As a result of the first phase of evaluation at home, the research verified the interest of families in communicating with non-verbal children. A partnership then emerged with professionals from other institutions such as PUC-Rio, UERJ and Fiocruz to develop the “ComuniZIKA” application. The application’s activities were created together with the mothers and work on interaction, thinking and language. Later this year, the application will be launched on a public platform.
inclusive education
Initiatives for schooling children with zika syndrome involve nine municipalities in Baixada and two in Sul Fluminense through the Permanent Forum on Special Education in Baixada Fluminense and Sul Fluminense, which includes the participation of managers from the Special Education network, researchers and funding from Faperj and CNPq.
“So far, the research has shown us how much the school benefits the development of these children, not only with regard to individual assessment, but also in the mothers’ reports. They did not even consider enrolling their children in a space other than the kindergarten. common, inclusive”, says Márcia Pletsch.
Data from the School Census, from Inep, show the evolution in the enrollment of students with disabilities in basic education in Brazil. In 1998, most students were in specialized philanthropic or public institutions, that is, segregated. At the time, only 13% of children attended regular classes.
This picture completely changed from 2008 onwards, when the inclusion rate surpassed that of enrollments in exclusive schools for the first time in the historical series. In the same year, the National Policy on Special Education from the Perspective of Inclusive Education was launched and the UN convention on the rights of people with disabilities was approved by means of a constitutional amendment.
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For the UFRRJ professor, the paradigm shift regarding people with disabilities in society over the decades is a reflection of advances in Brazilian legislation that have strengthened the “debate on inclusive education in the field of human rights”.
The last School Census, released in February, confirms the predominance of inclusive education in education networks and the preference of families for the public network. With the exception of EJA, all stages of basic education have more than 90% of students with a disability included in common classes in 2022, with the highest proportion in early childhood education.
“The educational proposal from an inclusive perspective is a dynamic process as is the field of human rights, including a permanent struggle. The most inclusive place in Brazil today are public schools. We have problems, challenges, but also many advances”, completes Pletsch who defends the intersectoriality between education, health and social assistance for the integral development of children with zika syndrome.
Public policy
In the same perspective, intersectoral programs of municipalities in the Baixada Fluminense that serve these children were analyzed. The result, in addition to consolidating the importance of integration strategies between health and education, identified weaknesses. According to the survey, actions generally take place when there is demand. However, locally structured policies are lacking.
“We are now starting a second moment, developing a pilot with two municipalities to think about local policies and intersectoral guidelines for people with disabilities, not just for children with zika”, says Márcia Pletsch, who also coordinates the Accessibility and Inclusion Center (NAI/ UFRJ).
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In the researcher’s opinion, another challenge is to strengthen policies that already exist in a more effective way, such as the Health at School Program, created in 2007 by decree of the Executive in the Lula government. The initiative articulates schools and Primary Health Care to promote prevention, promotion and health care actions such as psychosocial assessment and control of the vaccination schedule.
specialized training
One of the results of the research gave rise to a public-public partnership between UFRRJ, the State Secretariat for Science, Technology and Innovation (Secti) and the Center for Science and Higher Distance Education Foundation of the State of Rio de Janeiro (CECIERJ) to offer the first public specialization course in Special Education and Technological Innovation.
The course emerged from a pilot project in partnership with more than 50 professionals to develop guidelines for the arrival of children with zika syndrome in early childhood education classes during the pandemic.
“The specialization is a public achievement and for me it is a political act of resistance. In the state of Rio, until this specialization, 100% of the vacancies offered in the area of special education were from the private sector and now we have more than a thousand students from various regions of the state”, emphasizes Pletsch. Lasting one year, the first class graduates in May.
Another initiative that aims to include more children with multiple disabilities in schools is the first degree in Special Education in the state of Rio de Janeiro, offered by UFRRJ, starting this year. The start of classes is scheduled for April.
Source: BdF Rio de Janeiro
Editing: Mariana Pitasse
