Information Accessibility for People with Mental Disabilities, Including Autism Spectrum Disorders

164

Abstract

Identifying, assessing and overcoming informational barriers that arise among people with mental disabilities, in­cluding autism spectrum disorders (ASD), during communication, attract attention of all participants of the reha­bilitation process. Approaches to create a unified communication space, considering the use of easy language and alternative ways of communication for people with mental disabilities, are based on the principles of the Conven­tion on the Rights of Persons with Disabilities and the categories of the International Classification of Function­ing, Disability and Health (ICF). Statistical data on increased number of people recognized as disabled for the first time due to mental disorders and autism in the Russian Federation were systematized by the staff of the St. Petersburg Institute of Advanced Medical Experts. These data substantiate the need to revise accessibility of ICF based information at two levels — individual and social ones. Authors propose to develop a unified methodol­ogy of information accessibility, considering ICF provisions, including the legal ones. Given proposals are aimed at increasing informational accessibility for people with mental disabilities, including ASD. Authors emphasize that creating a unified national standard for the use of easy language for people with mental disabilities is one of the factors guaranteeing their civil rights.

General Information

Keywords: disabled people with impaired mental functions, autism spectrum disorders, information barriers, Convention on the Rights of Persons with Disabilities, International Classification of Functioning of Disability and Health, easy (plain) language

Journal rubric: Education & Intervention Methods

Article type: scientific article

DOI: https://doi.org/10.17759/autdd.2023210106

Received: 07.02.2023

Accepted:

For citation: Vladimirova O.N., Chistyakova N.P., Miroshnichenkо O.A. Information Accessibility for People with Mental Disabilities, Including Autism Spectrum Disorders. Autizm i narusheniya razvitiya = Autism and Developmental Disorders, 2023. Vol. 21, no. 1, pp. 49–58. DOI: 10.17759/autdd.2023210106. (In Russ., аbstr. in Engl.)

References

  1. Babkina M.D. Yasnyi yazyk kak sredstvo obespecheniya dostupnosti informatsiiMetodicheskie rekomendatsii. Predvaritel’nyi natsional’nyi standart [Eazy language as a means of ensuring the availability of information. Methodical recommendations. Pre-national standard]. Moscow: Publ. Our Sunny World, 2021. 144 p. ISBN 978-5-6045643-9-4. (In Russ.).
  2. Bogdashina O. Voprosy kommunikatsii pri autizme i sindrome Aspergera: govorim li my na odnom yazyke? [Issues in communication in autism and Asperger syndrome: do we speak the same language?]. Moscow: Publ. Our Sunny World, 2016. 304 p. ISBN 978-5-94607-206-9. (In Russ.).
  3. Verigina N.B. Dinamika invalidnosti detskogo naseleniya Rossijskoj Federacii za 2012—2018 gg. (informacionno-analiticheskij material). Mediko-social’nye problemy invalidnosti = Medical and social problems of disability, 2019. No. 3. Pp. 62—76; pp. 112—119. (In Russ.).
  4. GOST R 52872-2019 Internet-resursy i drugaya informatsiya, predstavlennaya v elektronno-tsifrovoi forme: Prilozheniya dlya statsionarnykh i mobil’nykh ustroistv, inye pol’zovatel’skie interfeisy: Trebovaniya dostupnosti dlya lyudei s invalidnost’yu i drugikh lits s ogranicheniyami zhiznedeyatel’nosti: utverzhden i vveden prikazom Rosstandarta ot 29 avgusta 2019 goda no. 589-st [GOST R 52872-2019: Web resources and other information presented in digital form: Applications for stationary and mobile devices, other user interfaces: Accessibility requirements for persons with disabilities: approved and actuated by the Rosstandard order from 29 August 2019 no. 589-st] [Web resource]. Moscow: Publ. Standartniform, 2019. 37 p. URL: https://protect.gost.ru/document.aspx?control=7&id=233736 (Accessed 16.02.2023).
  5. Druzhelyubnaya meditsina dlya patsientov s rasstroistvami autisticheskogo spektra (RAS): Kratkie algoritmy dlya meditsinskikh spetsialistov i materialy dlya roditelei [Amiable medicine for patients with autism spectrum disorders: Short algorithms for medical specialists and materials for parents] [Web resource] / Assotsiatsiya psikhiatrov i psikhologov za nauchno obosnovannuyu praktiku = Association of psychiatrists and psychologists for science-based practice. 2020. URL: https://doctor.autism.help/ (Accessed 19.02.2023).
  6. Dymochka M.A., Shkurko M.A., Verigina N.B. et al. Dinamika urovnya pervichnoj invalidnosti vsledstvie osnovny`x klassov boleznej sredi detskogo naseleniya Rossijskoj Federacii za 2019—2020 gg. (informacionno-analiticheskij material) [Dynamics of the level of primary disability due to the main classes of diseases among the child population of the Russian Federation for 2019—2020 (information and analytical material)]. Mediko-social`ny`e problemy` invalidnosti = Medical and social problems of disability. 2021. No. 3. Pp. 8—20.
  7. Ivanova G.E., Mel’nikova E.V., Shamalov N.A. et al. Ispol’zovanie MKF i ocenochnyh shkal v medicinskoj reabilitacii [The use of ICF and evaluation scales in medical rehabilitation] // Vestnik vosstanovitel’noj mediciny = Bulletin of restorative medicine. 2018. No. 3. pp. 14—20. (In Russ.).
  8. Kontseptsiya sovershenstvovaniya gosudarstvennoi sistemy mediko-sotsial’noi ekspertizy i reabilitatsii invalidov [Preliminary plan for perfecting the state system for medical and social expertise and rehabilitation for persons with disabilities] [Web resource] / Ministry of labor of the Russian Federation // Legal information system “Legalakt”. [Moscow], 2011. 18 p. URL: https://legalacts.ru/doc/kontseptsija-sovershenstvovanija-gosudarstvennoi-sistemy-mediko-sotsialnoi-ekspertizy-i/ (Accessed 16.02.2023).
  9. Kozlova N.V., Rogacheva T.V., Levickaya T.E. et al. Klinicheskij psiholog v sisteme kompleksnoj reabilitacii [Clinical psychologist in the system of complex rehabilitation] // Vestnik Kemerovskogo gosudarstvennogo universiteta = Bulletin of Kemerovo state university. 2020. Vol. 22, no. 1. pp. 131—138. DOI: 10.21603/2078-8975-2020-22-1-131-138. (In Russ.).
  10. Kozhushko L.A., Vladimirova O.N. Otsenka sistemy soprovozhdaemogo prozhivaniya invalidov s narusheniem psikhicheskikh funktsii [Accompanied accommodation for disabled people with mental disabilities]. Zhurnal nevrologii i psikhiatrii im. S.S. Korsakova = Korsakov Journal of Neurology and Psychiatry, 2022, vol. 122, no. 4, pp. 117—121. DOI:10.17116/jnevro2022122041117 (In Russ.).
  11. Konventsiya o pravakh invalidov: prinyata rezolyutsiei 61/106 General’noi Assamblei OON ot 13 dekabrya 2006 goda [Convention on the Rights of Persons with Disabilities: adopted by resolution 61/106 of the General Assembly UN from 13 December 2006] // UN: [official site]. URL: https://www.un.org/ru/documents/decl_conv/conventions/disability. shtml (Accessed 16.02.2023).
  12. Mezhdunarodnaya klassifikatsiya boleznei (10-i peresmotr). Klassifikatsiya psikhicheskikh i povedencheskikh rasstroistv. Klinicheskie opisaniya i ukazaniya po diagnostike [International Classification of Diseases (10th revision). Classification of mental and behavioral disorders. Clinical descriptions and diagnostic guidelines]. St. Petersburg: Publ. Adis, 1994. 303 p. ISBN 5-88578-002-1. (In Russ.).
  13. Mezhdunarodnaya klassifikatsiya funktsionirovaniya, ogranichenii zhiznedeyatel’nosti i zdorov’ya (MKF) (s izmeneniyami i dopolneniyami po sostoyaniyu na 2016 g.): proekt [International Classification of Functioning, Disabilities and Health (ICF) (with amendments and additions as of 2016): project]. St. Petersburg: Publ. Chelovek, 2017. 262 p.
  14. Nason B. Core Challenges of Autism. Sensory aspects of autism // Autizm i narusheniya razvitiya = Autism and developmental disorders (Russia). 2016. Vol. 14, no. 3, pp. 42—48. DOI: 10.17759/autdd.2016140304 (In Russ.).
  15. Nechaeva N.V., Khel’mle K.-S., Kairova E.M. Perevod na yasnyi i prostoi yazyki: zarubezhnyi opyt i perspektivy v Rossii [Translation into plain and easy languages: foreign experience and prospects in Russia] // Vestnik PNIPU: Problemy yazykoznaniya i pedagogiki = PNRPU Linguistics and Pedagogy Bulletin. 2020. No. 3. DOI: 10.15593/2224-9389/2020.3.1 (In Russ.).
  16. Prikaz Mintruda Rossii ot 27 avgusta 2019 goda no. 585н “O klassifikatsiyakh i kriteriyakh, ispol’zuemykh pri osushchestvlenii mediko-sotsial’noi ekspertizy grazhdan federal’nymi gosudarstvennymi uchrezhdeniyami mediko-sotsial’noi ekspertizy” [Order of the Ministry of Labor of Russia from 27 August 2019 no. 585n “On classifications and criteria used during the medical and social expertise for citizens by federal state institutions for medical and social expertise”]. [Moscow], 2019. 522 p. URL: https://mintrud.gov.ru/docs/mintrud/orders/1386 (Accessed 16.02.2023).
  17. Rasporyazhenie Pravitel’stva Rossiiskoi Federatsii ot 16 avgusta 2022 goda no. 2253-r «O Plane meropriyatii po realizatsii Kontseptsii razvitiya v Rossiiskoi Federatsii sistemy kompleksnoi reabilitatsii i abilitatsii invalidov, v tom chisle detei-invalidov, na period do 2025 goda» [Decree of the Government of the Russian Federation of August 16, 2022 no. 2253-r «On the Action Plan for the Implementation of the Concept for the Development in the Russian Federation of a System of Comprehensive Rehabilitation and Habilitation of the Disabled, including Children with Disabilities, for the Period until 2025»] / Government of the Russian Federation: [official site]. URL: http://government.ru/docs/46303/ (Accessed 16.02.2023).
  18. Dymochka M.A. (ed.) Sostoyanie i dinamika invalidnosti, kompleksnaya reabilitaciya i abilitaciya invalidov i detej-invalidov v Rossijskoj Federacii: doklad FGBU “Federal’noe byuro mediko-social’noj ekspertizy” Ministerstva truda i social’noj zashchity Rossijskoj Federacii. Moscow: Publ. FGBU FB MSE Mintruda Rossii. 2021. 436 p. (In Russ.).
  19. Federal’nyi zakon ot 24 noyabrya 1995 goda no. 181-FZ “O sotsial’noi zashchite invalidov v Rossiiskoi Federatsii” [Federal law from 24 November 1995 no. 181-FZ “On social protection for disabled persone in the Russian Federation”]. [Moscow], 1995. 20 p. URL: https://mintrud.gov.ru/docs/laws/75 (Accessed 16.02.2023).
  20. Shoshmin A.V., Lorer V.V., Mal’kova S.V. Otdel’nye aspekty implementatsii bazovogo nabora MKF pri rasstroistvakh autisticheskogo spektra v praktike reabilitatsii i abilitatsii [Separate aspects of the implementation of the ICF basic set for autism spectrum disorders in the practice of rehabilitation and habilitation] // Fizicheskaya i reabilitatsionnaya meditsina = Physical and Rehabilitation Medicine. 2020. Vol. 2, no. 4, pp. 51—58. DOI: 10.26211/2658-4522-2020-2-4-51-58 (In Russ.).
  21. Shoshmin A.V., Ponomarenko G.N., Besstrashnova Ya.K. et al. Primenenie Mezhdunarodnoi klassifikatsii funktsionirovaniya, ogranichenii zhiznedeyatel’nosti i zdorov’ya dlya otsenki effektivnosti reabilitatsii: metodologiya, praktika, rezul’taty [Application of the International Classification of Functioning, Disabilities and Health to Evaluate the Effectiveness of Rehabilitation: Methodology, Practice, Results] // Voprosy kurortologii, fizioterapii i lechebnoi fizicheskoi kul’tury = Problems of Balneology, Physiotherapy and Exercise Therapy, 2016. Vol. 93, no. 6, pp. 12—20. DOI: 10.17116/kurort2016612-20 (In Russ.).
  22. Shpitsberg I.L., Popova M.V., Krivoruchko S.O. Obespechenie uslovii dostupnosti vsekh ob”ektov infrastruktury i sotsial’nykh uslug dlya lyudei, imeyushchikh rasstroistva autisticheskogo spektra (RAS) i drugie formy mental’noi invalidnosti: informatsionno-metodicheskoe posobie [Fitting the conditions for accessibility for all infrastructure objects and social services for people with autism spectrum disorders and other forms of mental disabilities: informational and teaching guide]. Moscow: Publ. Our Sunny World, 2019. 92 p. ISBN 978-5-6044746-7-9. (In Russ.).
  23. Yasnyi i prostoi yazyki v Rossii: Proekt Assotsiatsii prepodavatelei perevoda [Easy and Plain Language in Russia: Project of the Association of Translation Teachers]. URL: https://easyandplain.ru/ (Accessed 19.02.2023).
  24. Titova E.G. (ed.) “Yasnyi yazyk”: kak sdelat’ informatsiyu dostupnoi dlya chteniya i ponimaniya: Metod. rekomendatsii [“Eazy language”: how to make information accessible for reading and comprehension: Teaching guidelines]. Minsk, 2018. 42 p. (Proekt “Dostup k informatsii dlya lyudei s invalidnost’yu, ili Yasnyi yazyk” [“Access to information for persons with disabilities, or Plain language” project]).
  25. Avellanet M., Selb М., Stucki G. et al. Utility of using the ICF Core Sets in clinical practice // Rehabilitacion. 2015. Vol. 49. No. 4. Pp. 197—201. DOI:10.1016/j.rh.2015.07.001
  26. Baumert A. Leichte Sprache — Einfache Sprache: Literaturrecherche, Interpretation, Entwicklung [Easy language — Plain Language: Literary research, Interpretation, Development]. Hannover: Publ. Bibliothek der Hochschule Hannover, 2016. 294 p. URL: https://serwiss.bib.hs-hannover.de/frontdoor/deliver/index/docId/697/file/ES.pdf (Accessed 16.02.2023).
  27. Bolte S., Schipper de E., Robison J.E. et al. Classification of functioning and impairment: The development of ICF Core Sets for autism spectrum disorder // Autism Research. 2014. Vol. 7 (1). Pp. 167—172.
  28. Crane L., Goddard L., Pring L. Sensory processing in adults with autism spectrum disorders. Autism, 2009, vol. 13, no. 3, pp. 215—228. DOI:10.1177/1362361309103794
  29. Maaß Chr. Easy Language — Plain Language — Easy Language Plus: Balancing Comprehensibility and Acceptability. Berlin: Publ. Frank & Timme, 2020. 305 p. ISBN 978-3-7329-9268-3. DOI:10.26530/20.500.12657/42089
  30. Selb M., Escorpizo R., Kostanjsek N. et al. A guide on how to develop an International Classification of Functioning, Disability and Health Core Set. European Journal of Physical and Rehabilitation Medicine, 2015, vol. 51, no. 1, pp. 105—117.

Information About the Authors

Oksana N. Vladimirova, Doctor of Medicine, rector, St. Petersburg Institute of Advanced Training of Medical Experts of the Ministry of Labor of Russia, St.Petersburg, Russia, ORCID: https://orcid.org/0000-0001-6692-2882, e-mail: vladox1204@yandex.ru

Natalia P. Chistyakova, Associate Professor of the Department of Social Psychiatry and Psychology, St. Petersburg Institute of Advanced Medical Experts of the Ministry of Labor of Russia, St.Petersburg, Russia, ORCID: https://orcid.org/0000-0002-7841-0953, e-mail: npch74@mail.ru

Oksana A. Miroshnichenkо, PhD in Psychology, Head of the Scientific and Methodological Department of the Federal Resource (Information and Methodological) Center for the Formation of an Accessible Environment for the Disabled and Other Low-Mobility Groups of the Population, St. Petersburg Institute of Advanced Medical Experts, St.Petersburg, Russia, ORCID: https://orcid.org/0000-0002-6327-1567, e-mail: miroshnichenko_oa@frcds.ru

Metrics

Views

Total: 684
Previous month: 32
Current month: 13

Downloads

Total: 164
Previous month: 7
Current month: 5