Skip to Main Content

Journal of Modern Foreign Psychology
2022. Vol. 11, no. 2, 101–112
doi:10.17759/jmfp.2022110209
ISSN: 2304-4977 (online)

Children with severe multiple disabilities: review of foreign literature

883

M.A. Vetrova, A.O. Vetrov

PDF (RUS)
Online translation in english
GS
Information
in Google Scholar

Abstract

This article is a review of foreign studies devoted to the organization of psychological and pedagogical assistance to preschool children with severe multiple disorders (SMD). Retrospective data and modern ideas about this nosological group in Russia are presented. In parallel, modern ideas about it in other countries, current research in the field of diagnostics, organization of education, upbringing and social rehabilitation of preschool children with severe disabilities are considered. Among the measures to address issues of development of the socio-communicative sphere, the effectiveness of measures aimed at teaching preschoolers and their immediate environment to use the means of alternative and additional communication, ensuring accessible and developing communication was noted. Among the features of the development and implementation of special educational programs, the importance of a team approach, cooperation with the family and orientation towards teaching disabled child vital skills are highlighted. When comparing the subject of discussion with domestic theory and practice, the similarity of terminological contradictions was noted, as well as the recognition and use in our country of many foreign methods and approaches.

General Information

Keywords: profound disabilities, severe disabilities, multiple disabilities, intellectual disabilities, developmental disabilities, systematic instruction, embedded instruction, natural cues, natural consequences, learning prompts, fading assistance, active learning, collaborative learning, alternative communication, augmentative communication, ACC

Journal rubric: Medical Psychology

Article type: scientific article

DOI: https://doi.org/10.17759/jmfp.2022110209

Acknowledgements. The authors are grateful to PhD in psychology, Professor of the Department of Special Psychology and Rehabilitation of MSUPE, Tatiana A. Basilova.

For citation: Vetrova M.A., Vetrov A.O. Children with severe multiple disabilities: review of foreign literature [Elektronnyi resurs]. Sovremennaia zarubezhnaia psikhologiia = Journal of Modern Foreign Psychology, 2022. Vol. 11, no. 2, pp. 101–112. DOI: 10.17759/jmfp.2022110209. (In Russ., аbstr. in Engl.)

References

  1. Aniskovich L.I. Pod pokrovom Tsaritsy Nebesnoi. Ekaterina Konstantinovna Gracheva [Under the protection of the Queen of Heaven. Ekaterina Konstantinovna Gracheva] [Elektronnyi resurs]. Autizm i narusheniya razvitiya [Autism and developmental disorders], 2007. Vol. 5, no. 2, pp. 32—41. URL: https://psyjournals.ru/autism/2007/n2/aniskovich.shtml (Accessed 23.06.2022). (In Russ.).

  2. Vsemirnyi doklad ob invalidnosti [World Report on Disability] [Elektronnyi resurs]. Vsemirnaya Organizatsiya Zdravookhraneniya [World Health Organization]. Mal’ta: WHO, 2011. 28 p. URL: https://apps.who.int/iris/bitstream/handle/10665/70670/WHO_NMH_VIP_11.04_rus.pdf?sequence=7 (Accessed 23.06.2022). (In Russ.).

  3. Ministerstvo prosveshcheniya Rossiiskoi Federatsii [Ministry of Education of the Russian Federation] (ed.). Ob utverzhdenii federal’nogo gosudarstvennogo obrazovatel’nogo standarta doshkol’nogo obrazovaniya [On approval of the federal state educational standard for preschool education] [Elektronnyi resurs]: Order № 1155 from 17.10.2013. 2013. URL: https://docs.edu.gov.ru/id850 (Accessed 23.06.2022). (In Russ.).

  4. Ministerstvo prosveshcheniya rossiiskoi federatsii [Ministry of Education of the Russian Federation] (ed.). Primernaya adaptirovannaya osnovnaya obrazovatel’naya programma doshkol’nogo obrazovaniya detei s tyazhelymi mnozhestvennymi narusheniyami razvitiya [Approximate adapted basic educational program for preschool education of children with severe multiple developmental disorders] [Elektronnyi resurs]. Reestr osnovnykh obshcheobrazovatel’nykh program [Register of basic educational programs]. 2020. 148 p. URL: https://fgosreestr.ru/poop/primernaya-adaptirovannaya-osnovnaya-orbazovatelnya-programma- doshkolnogo-obrazovaniya-detey-s-tyazhelymi-mnozhestvennymi-narusheniyami-razvitiya (Accessed 23.06.2022). (In Russ.).

  5. Chukhutova G.L. Nedonoshennost’ kak faktor narushennogo razvitiya rebenka [Prematurity as a factor of damaged child development] [Elektronnyi resurs]. Sovremennaya zarubezhnaya psikhologiya = Journal of Modern Foreign Psychology, 2014. Vol. 3, no. 1, pp. 72—85. URL: https://psyjournals.ru/jmfp/2014/n1/69053.shtml (Accessed 23.06.2022). (In Russ.).

  6. Berezhnaya O.V., Litvinova N.N., Samofatova K.A., Fadina A.K. Effektivnye praktiki organizatsii razvivayushchego ukhoda za det’mi s tyazhelymi mnozhestvennymi narusheniyami razvitiya: inform.-metod. sb. dlya spetsialistov [Effective practices of organizing developmental care for children with severe multiple developmental disorders: inform.-method. Sat. for specialists] [Elektronnyi resurs]. Moscow: Fond podderzhki detei, nakhodyashchikhsya v trudnoi zhiznennoi situatsii, 2021. 105 p. URL: https://fond-detyam.ru/pechatnye-izdaniya-fonda/15998/#pdf-document-0/ (Accessed 23.06.2022). (In Russ.).

  7. McDonnell J., Jameson J.M., Bowman J.A., Coleman O., Ryan J., Eichelberger C., Conradi L. Assessing Generalization in Single-Case Research Studies Teaching Core Academic Content to Students with Intellectual and Developmental Disabilities. Focus on Autism and Other Developmental Disabilities, 2020. Vol. 35, no. 3, pp. 143—152. DOI:10.1177/1088357620902500

  8. Boehm Thomas L., Eric Carter W. Family Quality of Life and Its Correlates Among Parents of Children and Adults with Intellectual Disability. American Journal on Intellectual and Developmental Disabilities, 2019. Vol. 124, no. 2, pp. 99—115. DOI:10.1352/1944-7558-124.2.99

  9. Borgström Å., Daneback K., Molin M. Young people with intellectual disabilities and social media: A literature review and thematic analysis. Scandinavian Journal of Disability Research, 2019. Vol. 21, no. 1, pp. 129—140. DOI:10.16993/ sjdr.549

  10. Brady N.C., Bruce S. Communication Services and Supports for Individuals with Severe Disabilities: Guidance for Assessment and Intervention. American Journal on Intellectual and Developmental Disabilities, 2016. Vol. 121, no. 2, pp. 121—138. DOI:10.1352/1944-7558-121.2.121

  11. Calculator S. Use and Acceptance of AAC Systems by Children with Angelman Syndrome. Journal of Applied Research in Intellectual Disabilities, 2013. Vol. 26, no. 6, pp. 557—567. DOI:10.1111/jar.12048

  12. Chadwick D., Buell S., Goldbart J. Approaches to communication assessment with children and adults with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 2019. Vol. 32, no. 2, pp. 336— 358. DOI:10.1111/jar.12530

  13. Light J., McNaughton D., Beukelman D., Koch Fager S., Fried-Oken M., Jakobs T., Jakobs E. Challenges and opportunities in augmentative and alternative communication: Research and technology development to enhance communication and participation for individuals with complex communication needs. AAC: Augmentative and Alternative Communication, 2019. Vol. 35, no. 1, pp. 1—12. DOI:10.1080/07434618.2018.1556732

  14. Cheminais R. How to Achieve Every Child Matters Standards: A Practical Guide. New York: SAGE Publications Ltd, 2007. 144 p. DOI:10.4135/9781446216606

  15. Nakken H., Vlaskamp C., Van der Putten A., Reynders K. Children with profound intellectual and multiple disabilities: The effects of functional movement activities. Clinical Rehabilitation, 2005. Vol. 19, no. 6, pp. 613—620. DOI:10.1191/0269215505cr899oa

  16. Coiffait Fleur-Michelle M., Leedha A.T. Psychological Well-Being of Children and Adults with Severe and Profound Intellectual and Developmental Disabilities. In Rubin I.L., Merrick J., Greydanus D.E., Patel D.R. (eds.), Health Care for People with Intellectual and Developmental Disabilities across the Lifespan. Switzerland: Springer International Publishing, 2016, pp. 1401—1419. DOI:10.1007/978-3-319-18096-0_113

  17. Dhondt A., Van keer I., van der Putten A., Maes B. Communicative abilities in young children with a significant cognitive and motor developmental delay. Journal of Applied Research in Intellectual Disabilities, 2020. Vol. 33, no. 3, pp. 529—541. DOI:10.1111/jar.12695

  18. Craig F., Savino R., Trabacca A. A systematic review of comorbidity between cerebral palsy, autism spectrum disorders and Attention Deficit Hyperactivity Disorder. European Journal of Paediatric Neurology, 2019. Vol. 23, no. 1, pp. 31—42. DOI:10.1016/j.ejpn.2018.10.005

  19. Camden C., Pratte G., Fallon F., Couture M., Berbari J., Tousignant M. Diversity of practices in telerehabilitation for children with disabilities and effective intervention characteristics: results from a systematic review. Disability and Rehabilitation, 2020. Vol. 42, no. 24, pp. 3424—3436. DOI:10.1080/09638288.2019.1595750

  20. Orelove F.P., Sobsey D., Gilles D.L. (eds.) Educating Students with Severe and Multiple Disabilities: A Collaborative Approach. Fifth Edition. Baltimore: Brookes Publishing, 2017. 552 p.

  21. May P., Vance R.L., Murphy E., O’Donovan M.-A., Webb N., Sheaf G., McCallion P., Stancliffe R., Normand C., Smith V., McCarron M. Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: A systematic review. BMJ Open, 2019. Vol. 9, no. 4, article ID e025735, 9 p. DOI:10.1136/bmjopen-2018-025735

  22. Rensfeldt Flink A., Johnels J. ., Broberg M., Thunberg G. Examining perceptions of a communication course for parents of children with profound intellectual and multiple disabilities. International Journal of Developmental Disabilities, 2022. Vol. 68, no. 2, pp. 156—167.

  23. Frounfelker S.A., Bartone A. The importance of dignity and choice for people assessed as having intellectual disabilities. Journal of Intellectual Disabilities, 2021. Vol. 25, no. 4, pp. 490—506. DOI:10.1177/1744629520905204

  24. Tassé M.J., Balboni G., Navas P., Luckasson R., Nygren M.A., Belacchi C., Bonichini S., Reed G.M., Kogan C.S.Identifying behavioral indicators for intellectual functioning and adaptive behavior for ICD-11 disorders of intellectual development. Journal of Intellectual Disability Research, 2019. Vol. 63, no. 5, pp. 386—407. DOI:10.1111/jir.12582

  25. Ismail F.Y., Shapiro B.K. What are neurodevelopmental disorders? Current Opinion in Neurology, 2019. Vol. 32, no. 4, pp. 611—616. DOI:10.1097/WCO.0000000000000710

  26. Light J., McNaughton D., Caron J. New and emerging AAC technology supports for children with complex communication needs and their communication partners: State of the science and future research directions. Augmentative and Alternative Communication, 2019. Vol. 35, no. 1, pp. 26—41. DOI:10.1080/07434618.2018.1557251

  27. McCann D., Bull R., Winzenberg T. The daily patterns of time use for parents of children with complex needs: A systematic review. Journal of Child Health Care, 2012. Vol. 16, no. 1, pp. 26—52. DOI:10.1177/1367493511420186

  28. Moorcroft A., Scarinci N., Meyer C. A systematic review of the barriers and facilitators to the provision and use of low- tech and unaided AAC systems for people with complex communication needs and their families. Disability and Rehabilitation: Assistive Technology, 2019. Vol. 14, no. 7, pp. 710—731. DOI:10.1080/17483107.2018.1499135

  29. Nijs S., Vlaskamp C., Maes B. Children with PIMD in interaction with peers with PIMD or siblings. Journal of Intellectual Disability Research, 2016. Vol. 60, no. 1, pp. 28—42. DOI:10.1111/jir.12231

  30. Novak I., Honan I. Effectiveness of paediatric occupational therapy for children with disabilities: A systematic review. Australian Occupational Therapy Journal, 2019. Vol. 66, no. 3, pp. 258—273 DOI:10.1111/1440-1630.12573

  31. Okamoto J., Lipkin P.H. The Individuals with Disabilities Education Act (IDEA) for Children with Special Educational Needs. Pediatrics, 2015. Vol. 136, no. 6, pp. 1650—1662. DOI:10.1542/peds.2015-3409

  32. Romski M.A., Sevcik R.A., Adamson L.B., Smith A., Cheslock M., Bakeman R. Parent perceptions of the language development of toddlers with developmental delays before and after participation in parent-coached language interventions. American Journal of Speech-Language Pathology, 2011. Vol. 20, no. 2, pp. 111—118. DOI:10.1044/1058-0360(2011/09- 0087)

  33. Kruithof K., Willems D., van Etten-Jamaludin F., Olsman E. Parents’ knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis. Journal of Applied Research in Intellectual Disabilities, 2020. Vol. 33, no. 6, pp. 1141—1150. DOI:10.1111/jar.12740

  34. Parton N.L. Every Child Matters: The shift to prevention whilst strengthening protection in children’s services in England. Children and Youth Services Review, 2006. Vol. 28, no. 8, pp. 976—922. DOI:10.1016/j.childyouth.2005.10.002

  35. McGuire D.O., Tian L.H., Yeargin-Allsopp M., Dowling N.F., Christensen D.L. Prevalence of cerebral palsy, intellectual disability, hearing loss, and blindness, National Health Interview Survey, 2009—2016. Disability and Health Journal, 2019. Vol. 12, no. 3, pp. 443—451. DOI:10.1016/j.dhjo.2019.01.005

  36. Düzkantar A., Öğülmüş K., Altın D., Görgün B. Review of International Studies on Multiple Disabilities. Sakarya University Journal of Education, 2020. Vol. 10, no. 3, pp. 532—559. DOI:10.19126/suje.670873

  37. Clark L.A., Cuthbert B., Lewis-Fernández R., Narrow W.E., Reed G.M. Three Approaches to Understanding and Classifying Mental Disorder: ICD-11, DSM-5, and the National Institute of Mental Health’s Research Domain Criteria (RDoC). Psychological Science in the Public Interest, 2017. Vol. 18, no. 2, pp. 72—145. DOI:10.1177/1529100617727266

  38. Töret G. Imitation Recognition by Minimally Verbal Young Children: A Comparison Between Down Syndrome and Autism Spectrum Disorder. Focus on Autism and Other Developmental Disabilities, 2022. Vol. 37, no. 1, pp. 34—45. DOI:10.1177/10883576211035030

  39. Carmona-Serrano N., López-Belmonte J., López-Núñez J.A., Moreno-Guerrero A.J. Trends in autism research in the field of education in web of science: a bibliometric study. Brain Sciences, 2020. Vol. 10, no. 12, article ID 1018, 22 p. DOI:10.3390/brainsci10121018

  40. Using the DEC Recommended Practices [Elektronnyi resurs]. Early Childhood Technical Assistance Center. ECTA Center, 2017. URL: http://www.ectacenter.org/decrp (Accessed 27.06.2022).

  41. Luitwieler N., Luijkx J., Salavati M., Van der Schans C.P., Van der Putten A.J., Waninge A. Variables related to the quality of life of families that have a child with severe to profound intellectual disabilities: A systematic review. Heliyon, 2021. Vol. 7, no. 7, article ID e07372, 11 p. DOI:10.1016/j.heliyon.2021.e07372

  42. Waters C.L., Friesen A. Parent Experiences of Raising a Young Child with Multiple Disabilities: The Transition to Preschool. Research and Practice for Persons with Severe Disabilities, 2019. Vol. 44, no. 1, pp. 20—36. DOI:10.1177/1540796919826229

  43. Wu Y., Chen M., Lo Y., Chiang C. Effects of Peer-Mediated Instruction with AAC on Science Learning and Communitive Responses of Students with Significant Cognitive Disabilities in Taiwan. Research and Practice for Persons with Severe Disabilities, 2020. Vol. 45, no. 3, pp. 178—195. DOI:10.1177/1540796919900955

Information About the Authors

Maria A. Vetrova, MA in Psychology, psychologist , Moscow State University of Psychology and Education (MSUPE), Moscow, Russia, ORCID: https://orcid.org/0000-0001-5083-2495, e-mail: m-vetrova@ro.ru

Alexander O. Vetrov, Primary school teacher, special teacher of the Federal Resource Center for Organization of Comprehensive Support for Children with ASD, Moscow State University of Psychology & Education, Moscow, Russia, ORCID: https://orcid.org/0000-0002-5854-2158, e-mail: unitedbear9390@gmail.com

Metrics

Views

Total: 5747
Previous month: 296
Current month: 188

Downloads

Total: 883
Previous month: 27
Current month: 29