Keywords
ethics
collaboration
international comparative studies
policy
Abstract
The paper is the result of collaboration between seven European universities and covers health, social pedagogy, and special education programs, aimed at the removal of barriers to social inclusion and social participation facing children and young adults with intellectual and developmental disabilities (IDD). The collaboration received funding from the Erasmus+ Intensive Program with the aim of developing a common curriculum on social inclusion for children and young adults with IDD. Identifying variables that support inclusion for individuals with IDD who engage in challenging behavior is critically important and this paper is built on reviewing social and educational policies from 5 European countries in order to do so. The paper reveals loopholes and paradoxes in policy that hinder social inclusion when addressing challenging behavior. The greatest challenges identified by the researchers are the gaps in training for different professions and the lack of overarching legislation for these professions. Another issue identified is government tolerance of a lack of clear competencies and codes of conduct amongst unregulated service providers.
Funding
This paper received funding from Erasmus Project title: “Removal of barriers to social inclusion and social participation for children and young adults with intellectual and developmental disabilities” SIIDD – Cooperation for innovation and the exchange of good practices KA203 - Strategic Partnerships for higher education- Erasmus 2019-1-SE01-KA203-060425
References
Ask, Karl, Ejelöv Ejelöv, & Pär Anders Granhag. 2019. “Eliciting human intelligence: The effects of social exclusion and inclusion on information disclosure.” Journal of Investigative Psychology and Offender Profiling 16(1): 3–17. https://doi.org/10.1002/jip.1516
Bach, Michael & Lana Kerzner. 2010. „A new paradigm for protecting autonomy and the right to legal capacity.” Retrieved September 10, 2020 (http://www.lco-cdo.org/disabilities/bach-kerzner.pdf).
Bartolo, Paul A., Eva Björck-Åkesson, Climent Giné, & Mary Kyriazopoulou. 2016. ”Ensuring a strong start for all children: Inclusive early childhood education and care.” International Perspectives on Inclusive Education 8: 19–35. https://doi.org/10.1108/S1479-363620160000008003
Baumeister, Roy F., Jean M. Twenge, & Christopher K. Nuss. 2002. “Effects of social exclusion on cognitive processes: Anticipated aloneness reduces intelligent thought.” Journal of Personality and Social Psychology 83(4): 817–827. https://doi.org/10.1037/0022-3514.83.4.817
Berhanu, Girma. 2014. “Special Education in Sweden today.” Advances in Special Education 28: 209–241. https://doi.org/10.1108/S0270-401320140000028014
Bernstein, Michael J. 2016. “Research in social psychology: Consequences of short- and long-term social Exclusion.” Pp. 51–72 in Social Exclusion. Psychological Approaches to Understanding and Reducing Its Impact, edited by P. Riva & J. Eck. Cham: Springer. https://doi.org/10.1007/978-3-319-33033-4_3
Bigby, Christine. 2012. ”Social inclusion and people with intellectual disability and challenging behavior: A systematic review.” Journal of Intellectual and Developmental Disability 37(4): 360–374. http://dx.doi.org/10.3109/13668250.2012.721878
British Institute of Learning, & Disabilities. 2016. “The seven key questions about Positive Behaviour Support.” Retrieved September 10, 2020 (https://www.england.nhs.uk/6cs/wp-content/uploads/sites/25/2016/07/bild-key-questions.pdf).
Care Quality Commission. 2017. “The state of care in mental health services 2014 to 2017.” NHS England. Retrieved September 10, 2020 (https://www.england.nhs.uk/ourwork/part-rel/cqc/).
Cooper, John O., Timothy E. Heron, & William L. Heward. 2007. Applied Behavior Analysis. Second Edition. Upper Saddle River, New Jersey: Pearson Education.
Cox, Alison D., Charmayne Dube, & Beverley Temple. 2015. “The influence of staff training on challenging behaviour in individuals with intellectual disability: A review.” Journal of Intellectual Disabilities 19(1): 69–82. https://doi. org/10.1177/1744629514558075
Danzer, Graham & Sarah M. Rieger. 2016. “Improving medication adherence for severely mentally ill adults by decreasing coercion and increasing cooperation.” Bulletin of Menninger Clinic 80(1): 30–48. DOI: 10.1521/bumc.2016.80.1.30
Department of Health. 2017. Restraint and restrictive intervention. Retrieved September 10, 2020 (https://www.gov.uk/government/organisations/department-of-health-and-social-care).
Department of Health. 2015. The Mental Health Act.
Department of Health. 2012. Transforming care: A national response to Winterbourne View Hospital.
Ellingsen, Karl E., Marit S. Isaksen, & Dirk Lungwitz. 2020. “Lav kompetanse og utstrakt bruk av deltid truer faglig forsvarlige tjenester til personer med utviklingshemming.” [Low competence and extensive use of part-time work threaten professionally sound services for people with developmental disabilities] Fontene forskning 13(1): 18–31. https://fonteneforskning.no/forskningsartikler/lav-kompetanse-og-utstrakt-bruk-av-deltid-truer-faglig-forsvarlige-tjenester-til-personer-med-utviklingshemming-6.19.746982.e7459ba705
Emerson, Eric. 2001. Challenging behavior. Analysis and intervention in people with severe disabilities (2nd ed.). Cambridge: Cambridge University Press.
Filia, Kate M., Henry J. Jackson, Susan M. Cotton, Andrew Gardner, & Eoin J. Killackey. 2018. “What is social inclusion? A thematic analysis of professional opinion.” Psychiatric Rehabilitation Journal 41(3): 183–195. http://dx.doi.org/10.1037/prj0000304
Floyd, Kory, Alice E. Veksler, Bree McEwan, Colin Hesse, Justin P. Boren, Dana R. Dinsmore, & Corey A. Pavlich. 2017. “Social inclusion predicts lower blood glucose and low-density lipoproteins in healthy adults.” Health Communication 32: 1039–1042. http://dx.doi.org/10.1080/10410236.2016.1196423
FO. 2019. Yrkestisk grunnlagsdokument for barnevernpedagoger, sosionomer, vernepleiere og velferdsvitere. Oslo: Fellesorganisasjonen. [FO. 2019. Professional codes for child welfare workers, social workers, social educators and welfare scientist. Oslo: Fellesorganisasjonen]. Retrieved September 10, 2020 (https://www.fo.no/getfile.php/1324847-1580893260/Bilder/FO%20mener/Brosjyrer/Yrkesetisk%20grunnlagsdokument.pdf).
Gherguț, Alois. 2005. Sinteze de psihopedagogie specială. [Synthesis of Special Education]. Iași: Polirom.
Goffman, Erving. 1971 [1961]. Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, 3rd edn. London: Penguin Books.
Grimen, Harald. 2008. “Profesjon og kunnskap.” [Profession and knowledge] Pp. 71–85 in Profesjonsstudier [Studies of professions], edited by A. Molander & L. Terum. Oslo: Universitetsforlaget.
Grung, Rolf Magnus. 2016. “The role of the social educator.” Learning Disability Practice 19(10): 24–26. doi:10.7748/ldp.2016.e1810
Grung, Rolf Magnus, Michael Brown, Samuel Abdulla, Julien-Ferencz Kiss, Florica Ortan, Anna Odrowaz-Coates et al. 2021. “Social inclusion in seven European countries: A reflection on the experiences of an Erasmus+ intensive programme.” Learning Disability Practice. DOI: 10.7748/ldp.2020.e2120
Helse- og omsorgstjenesteloven. 2011. Lov om kommunale helse- og omsorgstjenester m.m. (LOV-2011-06-24-30). [Health- and care service act. (2011). The Norwegian Act of municipal health- and care services. (ACT-2011-06-24-30)]. Retrieved September 10, 2020 (https://lovdata.no/dokument/NL/lov/2011-06-24-30).
Helsedirektoratet. 2015. Pasient- og brukerrettighetsloven med kommentarer. (Rundskriv IS-2015-8). [The Norwegian Directorate of Health (2015). The Patients- and Users Rights Act with comments. (Circular IS-2015-8). Retrieved September 10, 2020 (https://www.helsedirektoratet.no/rundskriv/pasient-og-brukerrettighetsloven-med-kommentarer).
Holden, Borge & Jens Petter Gitlesen. 2006. “A total population study of challenging behavior in the county of Hedmark, Norway: Prevalence, and risk markers.” Research in Developmental Disabilities 27(4): 456–465. https://doi.org/10.1016/j.ridd.2005.06.001
Hem, Marit H., Bert Molewijk, & Reidar Pedersen. 2014. “Ethical challenges in connection with the use of coercion: a focus group study of health care personnel in mental health care.” BMC Med Ethics 15: 82. https://doi.org/10.1186/1472-6939-15-82
Hem, Marit H., Elisabeth Gjerberg, Tonje L. Husum, & Reidar Pedersen. 2018. “Ethical challenges when using coercion in mental healthcare: A systematic literature review.” Nursing Ethics 25(1): 92–110. https://doi.org/10.1177/0969733016629770
Klang, Nina, Kerstin Göransson, Gunilla Lindqvist, Claes Nilholm, Susanne Hansson, & Karin Bengtsson. 2020. “Instructional Practices for Pupils with an Intellectual Disability in Mainstream and Special Educational Settings.” International Journal of Disability, Development and Education 67(2): 151–166. https://doi.org/10.1080/1034912X.2019.1679724
Kunnskapsdepartmentet. 2019. Forskrift om nasjonal retningslinje for vernepleierutdanning (FOR-2019-03-15-411). [The Norwegian Ministry of Education and Research. Regulations on national guidelines for social educator education (FOR-2019-03-15-411)] Retrieved September 10, 2020 (https://lovdata.no/dokument/SF/forskrift/2019-03-15-411).
Lärarnas Yrkesetiska Råd. 2014. Lärares Yrkesetik.: ett stöd för introduktionsperioden. Stockholm.
Lundström, Mats O., Helena Antonsson, Stig Karlsson, & Ulla H. Graneheim. 2011. “Use of Physical Restraints with people with Intellectual Disabilities Living in Sweden’s Group Homes.” Journal of Policy and Practice in Intellectual Disabilities 8(1): 36–41.
MIND. 2013. Mental health crisis care: physical restraint in crisis – A report on physical restraint in hospital settings in England. Retrieved September 10, 2020 (https://www.mind.org.uk/media/197120/physical_restraint_final_web_version).
National Education Law. 1/2011. Romania. Retrieved September 10, 2020 (http://legislatie.just.ro/Public/DetaliiDocument/125150).
National Education Law. 213/2004. Romania. Retrieved September 10, 2020 (http://legislatie.just.ro/Public/DetaliiDocument/52375#).
NHS England. 2016. “Stopping over medication of people with a learning disability, autism or both (STOMP).” Retrieved September 10, 2020 (https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/).
NICE. 2015. Challenging behavior and learning disabilities: prevention and interventions for people with learning disabilities whose behavior challenges (NG11). London: National Institute for Health and Care Excellence.
NICE. 2018. Learning disabilities and behavior that challenges: service design and delivery (NG93). London: National Institute for Health and Care Excellence.
Norvoll, Reidun, Marit H. Hem, & Reidar Pedersen. 2017. “The Role of Ethics in Reducing and Improving the Quality of Coercion in Mental Health Care.” HEC Forum 29(1): 59–74. DOI: 10.1007/s10730-016-9312-1
NOU 2019: 14. 2019. Tvangsbegrensningsloven — Forslag til felles regler om tvang og inngrep uten samtykke i helse- og omsorgstjenesten. [NOU 2019: 14. (2019). The Coercion Limitation Act – Proposal for common rules on coercion and intervention without consent in the health and care service] Retrieved September 10, 2020 (https://www.regjeringen.no/no/dokumenter/nou-2019-14/id2654803/sec2).
NOU 2001: 22. 2001. Fra bruker til borger—En strategi for nedbygging av funksjonshemmende barrierer. Sosial- og helsedepartementet. [From user to citizen — A strategy for elimination of disabling barriers. Ministry of Social Affairs and Health] Retrieved September 10, 2020 (https://www.regjeringen.no/no/dokumenter/nou-2001-22/id143931/?ch=1).
Odrowąż-Coates, Anna & Katarzyna Szostakowska. 2021. “Social pedagogy vs social work in Poland.” International Journal of Social Pedagogy 10(1): 3. https://doi.org/10.14324/111.444.ijsp.2021.v10.x.003
Opplærinngslova. 1998. Lov om grunnskolen og den vidaregåande opplæringa (LOV-1998-07-17-61). [The Education Act. (1998). The Norwegian Act of primary school and high school (ACT-1998-07-17-61) Retrieved September 10, 2020 (https://lovdata.no/dokument/NL/lov/1998-07-17-61).
Parodi, Giuliana & Dario Sciulli. 2012. Social Exclusion. Short and Long Term Causes and Consequences. Heidelberg: Physica-Verlag Heidelberg.
Pasient- og brukerrettighetsloven. 1999. Lov om pasient- og brukerrettigheter (LOV-1999-07-02-63). [Patients- and Users Rights Act (1999). The Norwegian Act on Patients- and Users Rights (ACT-1999-07-02-63)] Retrieved September 10, 2020 (https://lovdata.no/dokument/NL/lov/1999-07-02-63).
Pelto-Piri,Veikko, Lars Kjellin, Christina Lindvall, & Ingemar Engström. 2016. “Justifications for coercive care in child and adolescent psychiatry, a content analysis of medical documentation in Sweden.” BMC Health Services Research 16: 66. https://doi.org/10.1186/s12913-016-1310-0
Psykisk helsevernloven. 1999. Lov om etablering og gjennomføring av psykisk helsevern. (LOV-1999-07-02-62). [The Mental Health Care Act. (1999). The Norwegian Act on the establishment and implementation of mental health care. (ACT.1999-07-02-62)] Retrieved September 10, 2020 (https://lovdata.no/dokument/NL/lov/1999-07-02-62).
Richards, Michael. 2020. “Whorlton Hall, Winterbourne… person-centred care is long dead for people with learning disabilities and autism.” Disability & Society 35(3): 500–505. https://doi.org/10.1080/09687599.2019.1646530
ROU Const. Art. 50. Retrieved September 10, 2020 (http://www.cdep.ro/pls/dic/site2015.page?den=act2_1&par1=2#t2c2s0sba50).
ROU 2011: 292. 2011. Legea asistenței sociale [Social aistance act] Retrieved September 10, 2020 (https://mmuncii.ro/j33/images/Documente/Legislatie/Assistenta-sociala-2018/Legea_asistentei_sociale_18012018.pdf).
Roșan, Adrian. 2015. Psihopedagogie special. Modele de evaluare și intervenție [Special psycho-pedagogy. Models of evaluation and intervention] Iași: Polirom.
Simó-Pinatella, David, Cristina Mumbardó-Adam, Elisabeth Alomar-Kurz, George Sugai, & Brandi Simonsen. 2019. “Prevalence of Challenging Behaviors Exhibited by Children with Disabilities: Mapping the Literature.” Journal of Behavioral Education 28(3): 323–343. https://doi.org/10.1007/s10864-019-09326-9
Sjöstrand, Manne, Lars Sandman, & Petter Karlsson. 2015. “Ethical deliberations about involuntary treatment: interviews with Swedish psychiatrists.” BMC Med Ethics 16: 37. https://doi.org/10.1186/s12910-015-0029-5
Skinner, Burrhus F. 1957. Verbal Behavior. New York: Appleton Century-Crofts.
Special pedagogue program SU. 2020. Retrieved September 10, 2020 (https://www.su.se/sok-kurser-och-program/uqspp-1.412477?open-collapse-boxes=program-detail,programme-application).
Stevens, Alex. 2012. “The ethics and effectiveness of coerced treatment of people who use drugs.” Human Rights and Drugs 2(1): 7–16.
Syrjämäki, Aleksi H. & Jari K. Hietanen. 2019. “The effects of social exclusion on processing of social information – A cognitive psychology perspective.” British Journal of Social Psychology 58(3): 730–748. https://doi.org/10.1111/bjso.12299
Twenge, Jean M., Roy Baumeister, Dianne Tice, & Tanja S. Stucke. 2001. “If you can’t join them, beat them: Effects of social exclusion on aggressive behavior.” Journal of Personality and Social Psychology 81(6): 1058–1069. https://doi.org/10.1037/0022-3514.81.6.1058
United Nations. 2006. Convention on the rights of people with disabilities (CRPD). Retrieved September 10, 2020 (https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html).
Wilder, Jenny & Nina Klang. 2017. ”Sweden.” Pp. 104–118 in The Praeger international handbook of special education, edited by M. Wehmeyer & J. Patton. Santa Barbara: ABC-CLIO.
Wilkinson, Richard G. & Michael Marmot. 1998. Social determinants of health: The solid facts. Copenhagen: WHO Regional Office for Europe. Retrieved September 10, 2020 (https://apps.who.int/iris/handle/10665/108082).
World Health Organization. 2020. International statistical classification of diseases and related health problems (11th ed.). Retrieved September 10, 2020 (https://icd.who.int).
License
Manuscript authors are responsible for obtaining copyright permissions for any copyrighted materials included within manuscripts. The authors must provide permission letters, when appropriate, to the Society Register Editors.
In addition, all published papers in Society Register are published under a Creative Commons Attribution-NonCommercial 4.0 Unported License.
1.1 The Author hereby warrants that he/she is the owner of all the copyright and other intellectual property rights in the Work and that, within the scope of the present Agreement, the paper does not infringe the legal rights of another person. The owner of the copyright work also warrants that he/she is the sole and original creator thereof and that is not bound by any legal constraints in regard to the use or sale of the work.
1.2. The Publisher warrants that is the owner of the PRESSto platform for open access journals, hereinafter referred to as the PRESSto Platform.
2. The Author grants the Publisher non-exclusive and free of charge license to unlimited use worldwide over an unspecified period of time in the following areas of exploitation:
2.1. production of multiple copies of the Work produced according to the specific application of a given technology, including printing, reproduction of graphics through mechanical or electrical means (reprography) and digital technology;
2.2. marketing authorisation, loan or lease of the original or copies thereof;
2.3. public performance, public performance in the broadcast, video screening, media enhancements as well as broadcasting and rebroadcasting, made available to the public in such a way that members of the public may access the Work from a place and at a time individually chosen by them;
2.4. inclusion of the Work into a collective work (i.e. with a number of contributions);
2.5. inclusion of the Work in the electronic version to be offered on an electronic platform, or any other conceivable introduction of the Work in its electronic version to the Internet;
2.6. dissemination of electronic versions of the Work in its electronic version online, in a collective work or independently;
2.7. making the Work in the electronic version available to the public in such a way that members of the public may access the Work from a place and at a time individually chosen by them, in particular by making it accessible via the Internet, Intranet, Extranet;
2.8. making the Work available according to appropriate license pattern CC BY-NC 4.0 as well as another language version of this license or any later version published by Creative Commons.
3. The Author grants the Publisher permission to reproduce a single copy (print or download) and royalty-free use and disposal of rights to compilations of the Work and these compilations.
4. The Author grants the Publisher permission to send metadata files related to the Work, including to commercial and non-commercial journal-indexing databases.
5. The Author represents that, on the basis of the license granted in the present Agreement, the Publisher is entitled and obliged to:
5.1. allow third parties to obtain further licenses (sublicenses) to the Work and to other materials, including derivatives thereof or compilations made, based on or including the Work, whereas the provisions of such sub-licenses will be the same as with the Attribution 4.0 International (CC BY-NC 4.0) Creative Commons sub-license or another language version of this license, or any later version of this license published by Creative Commons;
5.2. make the Work available to the public in such a way that members of the public may access the Work from a place and at a time individually chosen by them, without any technological constraints;
5.3. appropriately inform members of the public to whom the Work is to be made available about sublicenses in such a way as to ensure that all parties are properly informed (appropriate informing messages).
6. Because of the royalty-free provision of services of the Author (resulting from the scope of obligations stipulated in the present Agreement), the Author shall not be entitled to any author’s fee due and payable on the part of the Publisher (no fee or royalty is payable by the Publisher to the Author).
7.1. In the case of third party claims or actions for indemnity against the Publisher owing to any infractions related to any form of infringement of intellectual property rights protection, including copyright infringements, the Author is obliged to take all possible measures necessary to protect against these claims and, when as a result of legal action, the Publisher, or any third party licensed by the Publisher to use the Work, will have to abandon using the Work in its entirety or in part or, following a court ruling in a legal challenge, to pay damages to a third party, whatever the legal basis
7.2. The Author will immediately inform the Publisher about any damage claims related to intellectual property infringements, including the author’s proprietary rights pertaining to a copyrighted work, filed against the Author. of liability, the Author is obliged to redress the damage resulting from claims made by third party, including costs and expenditures incurred in the process.
7.3. To all matters not settled herein provisions of the Polish Civil Code and the Polish Copyright and Related Rights Act shall apply.