Social and pedagogical rehabilitation infrastructure for children with autism spectrum disorder on the example of the Northwestern Federal District

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Abstract

Goal. A study of the rehabilitation infrastructure of the social and pedagogical spectrum of the Northwestern Federal District for children with autism spectrum disorder (ASD).

Materials and methods. The indicators of the level of disability of children with ASD were calculated and analyzed on the basis of data from the state statistical reporting in the Northwestern Federal District for 2018. Based on the information provided by the portal of the Federal Resource Center for the Organization of Comprehensive Support for Children with Autism Spectrum Disorders (FRC) a review of social and psychological and pedagogical services was carried out, indicators of the provision of children with organizations providing assistance to people with ASD, the structure of organizations by departments were studied (education, social protection of the population, non-profit organizations, excluding health care and culture and sports).

Results. In 2018, 5770 children were registered in the Northwestern Federal District, for the first time and repeatedly recognized as disabled due to mental disorders and behavioral disorders, of which 684 are disabled children with autism spectrum disorders, which amounted to 3.3% of the total disability of the child population on appeal to the bureau of medical and social expertise in the Northwestern Federal District. Rehabilitation measures/services for children with these disorders are provided in 205 organizations: mainly educational institutions - 94%, as well as social protection - 4%, non-profit organizations - 2%. Five regional resource centers have been organized: four of which are in the field of education - in the Leningrad, Murmansk, Pskov regions and the Komi Republic, one - in the field of social protection - in the Novgorod region. In the field of education, organizations implement adapted educational programs in accordance with Federal state educational standards and provide a range of medical and social rehabilitation services for children with ASD, depending on the type of organization (pre-school educational organizations, general education organizations, educational centers and others). In the field of social protection, organizations (rehabilitation centers and others) mainly provide assistance according to the standard for the provision of social services, including social, socio-medical, socio-psychological, socio-pedagogical, socio-labour, socio-legal services. Non-profit organizations located in St. Petersburg and Arkhangelsk provide social-psychological, social-pedagogical and social-labor services to children with ASD.

Conclusion. The results of the study showed that a social and pedagogical rehabilitation infrastructure was created for children with ASD in the Northwestern Federal District in 2018 (healthcare institutions were not studied). Children with ASD and their families can receive services in organizations of various departmental affiliation, which are represented in all constituent entities of the Russian Federation that are part of the Northwestern Federal District, but are concentrated mainly in urban areas, which limits children in obtaining services directly near their places of residence. A system has been created to inform specialists and parents about the rehabilitation infrastructure for children with ASD, which is presented by the FRC portal, at the same time, the need for the organization to submit data to the portal is optional. Services for children with ASD are aimed at solving issues of psychological, pedagogical, social and vocational rehabilitation, including career guidance work with adolescents and, as a result, at the social adaptation of a child with ASD and his integration into society.

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About the authors

Sofia Malkova

Federal Scientific Center for Rehabilitation of Disabled People named after G. A. Albrecht

Email: malkovas@center-albreht.ru
ORCID iD: 0000-0003-0893-7183
Russian Federation, St. Petersburg

Oksana Vladimirova

St. Petersburg Institute of Advanced Training of Medical Experts

Email: vladox1204@yandex.ru
ORCID iD: 0000-0001-6692-2882
Russian Federation, St. Petersburg

Victoria Lorer

Federal Scientific Center for Rehabilitation of Disabled People named after G. A. Albrecht; The First St. Petersburg State Medical University named after Academician I. P. Pavlov

Email: reabin@center-albreht.ru
ORCID iD: 0000-0002-7843-3004
Russian Federation, St. Petersburg; St. Petersburg

Zlata Kogan

Federal Scientific Center for Rehabilitation of Disabled People named after G. A. Albrecht

Email: reabin@center-albreht.ru
ORCID iD: 0000-0002-2577-9730

Младший научный сотрудник

Russian Federation, St. Petersburg

Igor Goryainov

The Main Bureau of Medical and Social Expertise in St. Petersburg; I. M. Sechenov First Moscow State Medical University( Sechenov University)

Author for correspondence.
Email: igoryaynov1983@gmail.com
ORCID iD: 0000-0001-8470-124X

руководитель экспертного состава

Russian Federation, St. Petersburg; Moscow

Marina Goryainova

St. Petersburg Institute of Advanced Training of Medical Experts

Email: marinagoryainova@mail.ru
ORCID iD: 0000-0001-8904-8614
Russian Federation, St. Petersburg

References

  1. ICD-11 for Mortality and Morbidity Statistics. 2018: 6A02 Autism spectrum disorder. Available from: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/437815624
  2. Convention on the Rights of Persons with Disabilities. UN; 2006. (In Russ). Available from: http://www.un.org/ru/documents/decl_conv/conventions/disability.shtml
  3. Federal Law of Russian Federation “O ratifikatsii Konventsii o pravakhinvalidov” of 03.05.2012 № 46-FZ. (In Russ). Available from: http://www.consultant.ru/document/cons_doc_LAW_129200/
  4. World Health Assembly resolution of 24.05.2014 WHA67.8 “Comprehensive and coordinated efforts for the management of autism spectrum disorders”. (In Russ). Available from: https://apps.who.int/gb/ebwha/pdf_files/WHA67-REC1/A67_2014_REC1-ru.pdf
  5. World Health Organization. Autism spectrum disorders. (In Russ). Available from: https://www.who.int/ru/news-room/fact-sheets/detail/autism-spectrum-disorders
  6. Portal of Federal Resource Center for Organization of Comprehensive Support to Children with Autism Spectrum Disorders. (In Russ). Available from: https://autism-frc.ru/companies
  7. Inter-agency plan for complex medical-social and psychological-pedagogical assistance to children with ASD and their families. (In Russ). Available from: https://autism-frc.ru/work/support-regions/457
  8. Сomplex medical-social and psychological-pedagogical assistance to children with ASD. Information and methodological compilation. Smolensk: Smolensk city printing house; 2016. 168 p. (In Russ).
  9. Decree of the President of the Russian Federation of 01.06.2012 № 46-FZ “O Natsional’noy strategii deystviy v interesakh detey na 2012–2017 gody”. (In Russ). Available from: https://base.garant.ru/70183566/
  10. Federal Law of Russian Federation of 29.12.2012 № 273-FZ “Ob obrazovanii v Rossiyskoy Federatsii”. (In Russ). Available from: http://www.consultant.ru/document/cons_doc_LAW_140174/
  11. Federal Law of Russian Federation of 28.12.2013 № 442-FZ “Ob osnovakh sotsial’nogo obsluzhivaniya grazhdan v Rossiyskoy Federatsii”. (In Russ). Available from: http://www.consultant.ru/document/cons_doc_LAW_156558/

Supplementary files

Supplementary Files
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1. JATS XML
2. Fig. 1. The structure of educational organizations, social protection and non-profit organizations providing services to children with autism spectrum disorder, depending on the department of subordination in the North-Western Federal District.

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3. Fig. 2. Rehabilitation services provided to children with autism spectrum disorder in educational organizations . HIA ― limited health opportunities; FSES ― federal state educational standards.

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4. Fig. 3. Types of services provided to children with autism spectrum disorder in the North-Western Federal District by educational, social protection organizations and non-profit organizations.

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