Are children under five with disabilities' educational rights acknowledged and supported in Chile?

Le résumé fourni par la source

In Chile last May 2023, the Ministry of Education in the webinar "Role of the Autism Spectrum Disorder (ASD) Law 1 in the current regulatory framework" released revealing data indicating that in 2015, 3,731 autistic students were registered in the School Integration Program (Programa de Integración Escolar -PIE), a number that in 2023 reached 43,428 autistic students, an increase of more than 1000% in 8 years (1). PIE is an inclusive strategy of the educational system, which has the purpose of contributing to the continuous improvement of the quality of education, favoring learning in the classroom and the participation of each and every one of the students, especially those with Special Educational Needs (SEN) (2). But not all schools have PIE. The coordinator for attention to the diversity of the Ministry of Education, in this same webinar, said that there is no data on the participation of autistic students in educational establishments that do not have PIE or in nursery education, so these statistics may even be more substantial and do not consider underfive children with disabilities.It is crucial to optimize school readiness for inclusive and equitable quality education for the most vulnerable children (3). Children with disabilities usually experience social and educational exclusion with an essential impact on their mental health and well-being (3). For this reason, it is relevant to have efficient early development screening and follow-up systems, adequate records, and the design of support systems that respond to children's needs and their families. In this way, the initiatives for enhancing early child development should prioritize children with developmental disabilities, nevertheless, this requires a multi-sectoral coordination that favors adequate indicators, monitoring, and evaluation of policies and services delivered.States around the world generate a large amount of data on the management and governance of the country. Historically, much of this data in Chile was only accessible through statistical reports that were not easily accessible to the public. In 2009, Chile enacted a law related to facilitating access to public information (4), and created an autonomous institution and guarantor of this regulation, the Council for Transparency (CPLT -Consejo para la Transparencia). Since then, any person in Chile has the right to request information from state administration departments, who, in turn, have the duty to respond to this requirement (5). The information that can be requested is the one related to the acts and resolutions of the State administration bodies, their foundations, the documents that serve as support, and the procedures used for their issuance. All information that is prepared with a public budget, whatever the format or medium in which it is contained, except for the exceptions contemplated in the Transparency Law. However, the technical feasibility and interconnection of the different institutions in charge of delivering the information are still lacking. Most of the information exists, but it is up to individuals and institutions how and what information they share with the general public.On August 25, 2008, Chile promulgated the decree 201 (6) ratifying the Convention on the Rights of Persons with Disabilities (CRPD) of the United Nations (UN). On February 10, 2010, Law No. 20,422 came into effect, establishing rules on equal opportunities and social inclusion of people with disabilities (7). Article 31 of the CRPD establishes that States parties must collect adequate information that allows them to formulate and implement public policies that ensure compliance with the Convention. This, in conjunction with Chilean Law No. 20.422 (7), establishes that the only way to accredit the disability and access its social benefits is through registration in the National Registry of Disability (RND -Registro Nacional de Discapacidad) (7). This requires completing the Disability Qualification and Certification process, which conforms to the guidelines and standards of the International Classification of Functioning (ICF) of the World Health Organization (WHO).Although registration in the RND is voluntary in Chile, People with Disabilities (PWD) are encouraged to join. Having the information of all -or most-PWDs would be an important source of information for formulating public policies according to their needs. Having a reliable source of statistical information would be a major success for the country because the statistics now are simply referential. Unfortunately, there is currently no public information on how many families with children under five with disabilities have completed the process of obtaining the disability credential, a physical document that is used daily to access benefits for the person who is enrolled in the RND. The only sources of public information are the National Survey of Health and Disability (Encuesta Nacional de la Discapacidad, ENDISC) (8) and the National Disability and Dependency Survey (Encuesta Nacional de la Discapacidad y Dependencia, ENDIDE) (9).As stated in ENDISC and ENDIDE, 17.6% of the Chilean population over 18 has a disability, while 14,7% are children between 2 and 17 years old. According to our estimates, using the information from this survey and the information provided by SENADIS, about 12.7% of them would be children between 2 and 5 years old. Among 5.526 children between 2-17 years old, only 94 (1.7%) are enrolled with the RND. In Colombia, for example, the Registry for the Location and Characterization of People with Disabilities (RLCPD) registered 981,181 PWD as of May 2013, a number that, to date, corresponds to 37.4% of PWD identified in the Census (10).To have a better understanding of the information that different sectors have regarding under-five children with disabilities in Chile, we requested, through the CLPT, additional reports to 6 Chilean governmental institutions that provide services to young children: The institutions that were contacted answered the request for information within the time indicated by the law. However, we received only partial, fragmented information, not disaggregated by age. We did not receive annual reports of students enrolled within the school system who are also enrolled in the RND from any of the institutions we requested information from.With less than 2% of the children between 2 and 17 years old registered on the RND, Chile has a massive debt with under-registration (9). Furthermore, no Chilean governmental institution seems to publish annual reports tracking both school enrollment and disability. Specifically, we requested the last five national annual reports of students enrolled within the school system who are also enrolled in the RND, disaggregated by age (0-5/6-12/13-18 years), region, and type of disability. Law No. 20.422, in article 55 (7), says that the RND is an administrative registry dependent on the SRCEI. So, we decided to ask first to the SRCEI, but they said that the institution in charge of that information is SENADIS. In parallel, we asked for data from the Sub-Secretariat of Nursery Education and the Sub-Secretariat of Health, the main two ministers that could be involved.The first one was categorical to answer that they don't have that type of information and deriving us fully to SENADIS, again, and the second also categorically answer that they don't have that type of information, but derive us fully to the SRCEI. This was the first contradiction that the different agencies had about existing information. We also try to get data from JUNJI & INTEGRA, both governmental institutions that provide public nursery education. JUNJI once again referred us to the SRCEI, and INTEGRA answered that they don't do annual reports, and sent us an archive of the workers with disability working for INTEGRA. SENADIS did reply with the information we solicited, but they didn't specify children under-five with disabilities, o

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