Family-centred services for young children with intellectual disabilities and their families: Theory, policy and practice

Abstract

This paper outlines the reported discrepancies between the aims of the welfare services in Iceland and the experiences of parents raising young children with intellectual disabilities. Prevailing views on disability and service delivery were also considered. A multi case study design was employed to reflect the situation in different parts of the country. Families of eight children with intellectual disabilities and professionals in three different municipalities formed the cases. The findings reveal a high convergence between the three cases with variations based on individual experiences rather than geographical location. Overall, parents praised the preschools but experienced support services often as fragmented and uncompromising. Particular components of the services were consistently regarded as hard to reach and not in accordance with the needs of the family. Cultural-historical activity theory is introduced as a beneficial framework for further study and system improvement.

Rethinking Practices by Rethinking Expertise: A Relational Approach to Family-Centred Inclusive Services

“…Thus, official service providers and professionals are obliged to abolish practices that do not comply with its requirements and promote appropriate professional and institutional development. Research findings focusing on welfare services for disabled children and their families commonly report poor coordination, the lack of relevant resources, and difficult access to recommended services as the main concerns of families raising disabled children (Egilson & Stefánsdóttir 2014;Egilson 2015;Goodley & McLaughlin 2008;Ingólfsdóttir, Egilson & Traustadóttir 2017;Ingólfsdóttir, Jóhannsdóttir & Traustadóttir 2018;Tøssebro & Wendelborg 2015). Along with the paradigm change from a medically and impairment-focused focus to a rights-based and relational way of thinking about disability as required by the CRPD (Traustadóttir 2009), there is an overall call for changes in welfare and educational practices (Dunst, Trivette & Hamby 2007;Edwards et al 2009;Goodley 2011;Edwards 2017;).…”

“…A family-centred approach in services is a way of working in partnership with families to better understand their unique circumstances and to help parents decide what strategies will best suit their families (Dunst & Espe-Sherwindt 2016). Despite ambitious and often progressive policies about providing family-centred inclusive services for disabled children and their families, more research is needed in this field on what this really means for service providers (Foster et al 2020) as numerous studies show persistent difficulties in translating these policies into practice (Dodd, Saggers & Wildy 2009;Egilson 2011;Egilson & Stefánsdóttir 2014;Ingólfsdóttir, Egilson & Traustadóttir 2017). The study presented in this article is part of a larger qualitative multi-case research project that investigates the mismatch between policy ideals and the provision of services aimed at disabled children of preschool age and their families in Iceland (Ingólfsdóttir, Egilson & Traustadóttir 2017).…”

Working relationally to promote user participationin welfare services for young disabled children and their familiesin Iceland

“…To clarify the way in which practitioners collaborate to overcome contradictions, Engeström (2001) developed the 'expansive learning theory' and presented a model of the expansive learning cycle (Figure 3) for analysing and supporting development. The expansive learning cycle directs analysis of step-by-step evolution of activities (Engeström 2016 THE RESEARCH This paper is part of an on-going qualitative multi-case research (Creswell, 2008) focusing on services for young disabled children (2-6 years of age) and their families in Iceland (Ingólfsdóttir et al, 2017). It is a theory-led research (Simons, 2009) based on family-centred theory (Bamm and Rosenbaum, 2008;Dunst, 2002) and the Nordic relational view on disability (Tøssebro, 2004).…”

“…This article is based on data derived from on-going multi-case research on services for young disabled children (2-6 years) and their families in Iceland (Ingólfsdóttir, Egilson & Traustadóttir, 2017). The aim of this part of the project is 1) to identify the main contradictions that explain tensions and dilemmas within the service system as experienced by the parents, and 2) to suggest potential solutions for improving practices in accordance to family-centred inclusive policy and enhanced user-participation.…”

The right support for the best start

“…The papers in this edition all relate to children and young people with intellectual disabilities and their families and highlight a number of different approaches to the provision of support. Nonetheless, it is one of the key messages in the paper by Ingolfsdottir et al (2018) that holds a significant key to effecting significant and sustainable change. Within this paper, parents identify that support can be fragmented and inflexible: the need for family-centred services is stressed.…”