The paradox of early intervention: families’ participation driven by professionals throughout service process

Abstract

Introduction: Early intervention conceived as a program for young infants and toddlers with developmental needs and their families, how early intervention practice establishes family participation in the service process -from referral, evaluation, Individualized Family Service Plan (IFSP) meeting, to service delivery -was considered in this article. Employing disability studies perspectives, the study contends that although families have gained legal rights for family participation in the law, the requirements do not guarantee the quality of family participation. Using a qualitative case study approach, this study looked at both participation and perceptions of families in the early intervention service process in the metropolitan area of the US. Case description: Three families' experience in the process of early intervention was observed, and how these parents reflect on their participation in the development of early intervention service planning and delivery was examined through in-depth interviews.

The meaning of early intervention: A parent's experience and reflection on interactions with professionals using a phenomenological ethnographic approach

“…Although the initial intention of early intervention was to provide individualized services for children with special needs and their families, in practice, professionals tend to lean toward a more professionally driven and less family-centered service model (Dunst, 2012 ; Jung & Grisham-Brown, 2006 ; Lee, 2015 ). Dunst particularly criticized how the practice relies on private providers and their services, referring to the field as an early intervention industry.…”

“…Parents sometimes position themselves as individuals with less expertise who require assistance from experts to increase their knowledge level and to aid the progress of their child's development and education. As a result, the relationship between parents and professionals does not always develop into the mutual relationship as described by the law, but tends toward a one-sided dependence of one group (i.e., parents) on another group (i.e., professionals) with greater knowledge and expertise (Lee, 2015 ).…”

Identifying and Shifting Disempowering Paradigms for Families of Children With Disability Through a System Informed Positive Psychology Approach

“…Despite the existince of family-centered approaches that aim to empower families, professionals still dominate the early intervention process ( Dunst, 2016 ). Families are unsurprisingly at risk of deferring to professional expertise and experience in the early diagnosis period ( Lee, 2015 ). The initial process of diagnosis, how that information is explained, and the support – or lack thereof – is in itself a significant experience for many families ( Murray, 2000 ).…”

“…As such, within the planning process, professionals often dominate the conversation, causing parents to feel left out of important decisions. Bureaucratic requirements overtake opportunities for families to express their choices and priorities, and in doing so, the voice of professionals, as expert and authority, is prioritized over that of the family ( Lee, 2015 ).…”

2018 Janson Piloting a novel capacity building tool with early intervention practitioners ADVANCE PRE PROOF.pdf

“…Family-centred and strength-based approaches strive to engage parents in 'participatory' experiences (Dunst, Bruder & Espe-Sherwindt, 2014). Moore, Fong & Rushton (2018) however, highlighted that practitioners have been challenged to consistently apply these practices resulting in some families feeling beholden to professionals and experts (Lee, 2015), focusing on increasing interventions and therapy (Mahoney & Perales, 2011) or experiencing low confidence in their decision making (Gatmaitan & Brown 2015;Kearney & Griffin, 2001;Lee, 2015;Pang, 2011). Swanson, Raab and Dunst (2011) stated that the Parenting Capacity Building empowerment paradigm creates opportunities that support and strengthen a sense of confidence and competence in parents.…”