Palikara, O., Castro-Kemp, S., Ashworth, M. and Van Herwegen, J. (2022) All views my own? Portraying the voices of children with complex neurodevelopmental disorders in statutory documents. Research in Developmental Disabilities, 129 . 104321. doi:10.1016/j.ridd.2022.104321 ISSN 0891-4222.

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Abstract

Portraying the voices of children with complex genetic neurodevelopmental disorders about their health, care and education needs in their statutory documents is a challenging task. This study examined the ways by which the perspectives of children diagnosed with Down Syndrome (DS) and Williams Syndrome (WS) are portrayed in their statutory documents, namely the Education Health and Care plans, in England. Using the International Classification of Functioning Disability and Health for Children and Youth, we analysed the content of Section A of the Education Health and Care plans of 52 children and young people with WS and DS, between 5 and 26 years of age. A minority of statutory documents (7.7 %) explicitly reported the children’s voices, and many failed to document how the children’s voices were accessed. Only a few specific or evidence-based tools to access their voices were reported. Most statutory documents portrayed parental rather than children’s voices concerning aspects of their health, care, and education. This study highlights the need to establish the use of evidence-based tools for ascertaining the voices of children with complex neurodevelopmental disorders and including them in decision making about their health, care and education needs.

Item Type:	Journal Article
Subjects:	H Social Sciences > HV Social pathology. Social and public welfare Q Science > QP Physiology R Medicine > RC Internal medicine R Medicine > RJ Pediatrics
Divisions:	Faculty of Social Sciences > Centre for Education Studies (2013- )
Library of Congress Subject Headings (LCSH):	Developmental neurobiology, Developmental disabilities, Child development deviations, Williams syndrome , Down syndrome , Education, Health and Care (EHC) plans -- Evaluation, Children with mental disabilities -- Services for
Journal or Publication Title:	Research in Developmental Disabilities
Publisher:	Pergamon
ISSN:	0891-4222
Official Date:	October 2022
Dates:	Date Event October 2022 Published 2 August 2022 Available 31 July 2022 Accepted 28 April 2022 Submitted
Volume:	129
Number of Pages:	7
Article Number:	104321
DOI:	10.1016/j.ridd.2022.104321
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Restricted or Subscription Access
Date of first compliant deposit:	1 August 2022
Date of first compliant Open Access:	17 August 2022
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID UNSPECIFIED Williams Syndrome Foundation http://dx.doi.org/10.13039/501100000347
Related URLs:	Publisher

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