dc.check.date	2023-12-16
dc.check.info	Access to this article is restricted until 24 months after publication by request of the publisher.	en
dc.contributor.author	Frizelle, Pauline
dc.contributor.author	Ceroni, Anna
dc.contributor.author	Bateman, Lorna
dc.contributor.author	Hart, Nicola
dc.date.accessioned	2021-12-20T16:04:23Z
dc.date.available	2021-12-20T16:04:23Z
dc.date.issued	2021-12-16
dc.date.updated	2021-11-15T09:34:27Z
dc.description.abstract	The need for speech and language therapy (SLT) for people with Down syndrome (DS) is well documented. However, there is a significant disparity between research and practice. This study addresses two of the three pillars of evidence-based practice by 1) quantitatively profiling some key features of the 2019 public SLT service in Ireland, and referencing this against current best evidence; 2) asking parents, and adults with DS what supports they need in relation to an adequate SLT service. Adults with DS (n = 33) and parents of those with DS (n = 557), completed an anonymous survey online. The function of the survey was to collect information on: SLT service provision; levels of satisfaction with services; and SLT supports required. Based on parent responses, only 44% of participants (n = 253) were offered public SLT services in 2019. The mode waiting time was 1–2 years and the average number of sessions across the age groups was 5 per year. There was a strong association between age and number of sessions. Individual therapy was the most common model of service. A total of 40% of parents reported a 0 level of satisfaction. Seven key themes emerged from the qualitative support data. None of the participating adults received public SLT services in 2019. Our aspiration for evidence-based SLT practice is far from being realized. The average number of sessions reported, does not in any way approximate the intervention intensity specified in evidence-based interventions. Our limited service, at all ages, has detrimental implications for people with DS and our negligible adult service is in breach of human rights. Targeted, strategic investment is needed to allow practice to be aligned with best evidence; to support and treat people with DS effectively; to allow them to reach their maximum potential; and to exercise their right to communicate.	en
dc.description.status	Peer reviewed	en
dc.description.version	Accepted Version	en
dc.format.mimetype	application/pdf	en
dc.identifier.citation	Frizelle, P., Ceroni, A., Bateman, L. and Hart, N. (2021) 'Speech and language therapy services for people with Down syndrome: The disparity between research and practice', Journal of Policy and Practice in Intellectual Disabilities. doi: 10.1111/jppi.12405	en
dc.identifier.doi	10.1111/jppi.12405	en
dc.identifier.eissn	1741-1130
dc.identifier.issn	1741-1122
dc.identifier.journaltitle	Journal of Policy and Practice in Intellectual Disabilities	en
dc.identifier.uri	https://hdl.handle.net/10468/12364
dc.language.iso	en	en
dc.publisher	John Wiley & Sons, Inc.	en
dc.rights	© 2021, International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, LLC. This is the peer reviewed version of the following item: Frizelle, P., Ceroni, A., Bateman, L. and Hart, N. (2021) 'Speech and language therapy services for people with Down syndrome: The disparity between research and practice', Journal of Policy and Practice in Intellectual Disabilities, doi: 10.1111/jppi.12405, which has been published in final form at: https://doi.org/10.1111/jppi.12405. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.	en
dc.subject	Down syndrome	en
dc.subject	Intellectual disability	en
dc.subject	Speech and Language Therapy	en
dc.subject	Evidence based practice	en
dc.title	Speech and language therapy services for people with Down syndrome: The disparity between research and practice	en
dc.type	Article (peer-reviewed)	en

Speech and language therapy services for people with Down syndrome: The disparity between research and practice

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