Inclusive Early Childhood Service System project (IECSS)
Abstract
The Inclusive Early Childhood Service System (IECSS) project partnership began in 2014 and centres on an ongoing longitudinal study of how healthcare and early-intervention services respond to childhood disability. The project was co-designed with community partners including Indigenous-led organizations, early child-development agencies and municipal government. It aims to understand structural aspects of exclusion, the ways that disability is constructed in these contexts, and the possibilities for ensuring access to interventions and therapeutic services, while also enabling disabled children to build positive disability identities.
Introduction
Early identification, intervention and education are all concepts that have emerged from Western medicine, with the aim of ensuring that children have the ‘best start’ in life—a phrase used in many government and early-intervention campaigns. The early years of life, before children enter school, are important for development. However, normative frameworks for understanding early development are perpetuating social norms with relation to what is a ‘good childhood’ and who is a ‘good parent’. We believe that early intervention should be informed by communities, and that people with lived experience are best positioned to develop programs, activities and support. Many children in Canada do not have access to early-intervention services, especially in northern and remote communities, but also in urban settings where private health insurance is often the primary mechanism of access. We have identified the complexity of the early-years system for disabled children and their families, and are committed to early childhood healthcare that works for these communities.
Who should benefit?
In Canada, close to 20% of the population are estimated to experience disability and approximately one-third of children are estimated to be at risk developmentally as they enter school. At the same time, healthcare, education and social service systems are stressed to breaking point. We have been studying how early childhood education and care (ECEC) policy, family courts, child custody, immigration, citizenship and other judicial systems work with or against access to early healthcare. For early clinical services to effectively address the structural mechanisms that exclude children and their families from healthcare, education and the economy, it is essential to disaggregate data based on social characteristics, such as race, socio-economic status and geographic location. The IECSS project does this through an innovative long-term partnership that is grounded in respect for the value of disabled children and their lives. The IECSS project aims to understand the interactions that children and their families have with healthcare, education, and social services, with the goal of transforming systems rather than focusing solely on individual interventions. We have made substantial contributions to social policy to improve service accessibility and the material realities of disabled children’s lives so that they and their families thrive in society.
Utilizing longitudinal institutional ethnography, we have been addressing several questions that are relevant to building inclusive healthcare systems. Who has power and control when a child and family are transferred to a new service or professional? What actions are families taking to gain access and referrals? What resources do families need to be successful in their participation (for example, socio-economic advantage)?
Young disabled children are underrepresented in disability justice discourse, in part because most are cared for by adults who are not disabled, and also because our systems are designed by health clinicians with the goal of curing disability rather than building positive disability identity. The IECSS project seeks to fill a major gap in how health, education and social service systems fit together and affect disabled children and their families. As governments and international organizations invest in disability-specific services, it is critical that we have access to the experiences of disabled children and their families to inform the design and implementation of interventions.
Engagement
The IECSS project is a multi-disciplinary, national, community-driven partnership that is directly informed by our ongoing longitudinal study of early childhood systems from the standpoint of families who have disabled children. Our partners, including municipal governments, Indigenous-led organizations and developmental service organizations, have driven the research design, analysis and dissemination. The participants, who work in four different advisory groups, come from nine communities across Canada that span urban, rural, remote and First Nations areas.
Members of Indigenous communities, particularly Knowledge Keepers from Temiskaming district in Northern Ontario, have been leaders of the project. These elders, who comprise one of the four advisory committees, have guided our work with traditional knowledge and interpretation of data; informed our belief that each child’s wellbeing is dependent upon access to health services within their community; and embedded the value of cultural perspectives of childhood and disability into the project. The elders co-hosted a three-day gathering (‘Let the Rivers Flow’) to share the experiences of disabled Indigenous children, youths, and families. This event led to the development of a website and a public report, as well as a campaign to address the lack of involvement of disabled children and their families in creating the policies that support them.
The IECSS project also has three other advisory committees which focus on youth, international, and Black experiences. They support our analysis of findings and work to mobilize our research within these communities. Each of these committees determines their own interests and agenda, and as a result they have carried out distinct activities.
For the IECSS project team, engagement with community partners has led to more than 50 community presentations, as well as advisory roles with municipal, provincial and federal government committees, with a focus on childhood disability, poverty, integrated health systems, childcare, family support and early intervention. For example, we have shared our findings with communities regarding the re-design of early-years systems to better integrate health and care services, and to provide more appropriate family support. One of our approaches to knowledge sharing involved a photographic exhibition which displayed some of the documents used in service systems. This exhibition has been presented in children’s hospitals, at clinical psychology grand rounds, and at professional development workshops for early interventionists.
Research
Our longitudinal study is based on annual interviews with families of children who access disability and developmental services. Participants are asked about the actions they have taken to access institutions on behalf of their children. Our methodological approaches produce empirical evidence of the ideologies, processes and social relationships involved in early intervention, care and education for children with disabilities, guided by institutional ethnography.
Our study of institutional practices draws on more than 1,000 interviews with 156 participants who are the mothers, fathers, foster parents, adoptive parents, parental guardians or grandparents of children with disabilities. The interviews are transcribed and the information is transposed into an attributes table that has more than 100 variables related to intake processes, wait-times, funding, service allocation and so on. Information about other relatives who access institutional services is collected, as this can affect the capacity of a family to carry out the work needed to find support for their children. In addition, we collect demographic information about type of disability, race, economics, education levels, and employment. This approach to data collection was informed by our community partners who noted the critical importance of understanding disability in childhood from the perspective of families first. Our data analysis is based on critical theory, including critical disability theory, childhood studies and Indigenous worldviews.
Our results are used to develop maps of service interactions, in order to visually understand family interactions with institutions in terms of processes and pathways. The maps have been developed over nine years of interviews, which allows us to see changes over time as well as patterns between participants (for example, while disability diagnosis has seemed to be a focus of professional discourse it has had a relatively low impact on how and which services are offered) and between communities (for example, there has been better access to private services in urban communities). The study has yielded important findings about the ways in which distinct systems (such as child welfare, preschool speech and language, childcare, occupational therapy and access to assistive devices) interact with healthcare. Ongoing analysis of our dataset has revealed unanticipated complexity in family service interactions over time, and effects of external factors such as policy changes and public health events such as the COVID-19 pandemic. The long duration of the study has presented unique opportunities for new factors to be analysed in the context of ongoing social change.
