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

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Appendix S1: Supplementary Information
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Figure S1 Frequency of SLT sessions received during 2019 by age group
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Figure S2 Type of Service Provision by Educational Stage
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Table S1 Counties of Residence of survey respondents
Date
2021-12-16
Authors
Frizelle, Pauline
Ceroni, Anna
Bateman, Lorna
Hart, Nicola
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John Wiley & Sons, Inc.
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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.
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Keywords
Down syndrome , Intellectual disability , Speech and Language Therapy , Evidence based practice
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
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© 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.