Individualised funding models are gaining support around the world and their positive effects have been documented (Lord et al 2006; Lord & Hutchison, 2003; Spalding 2008). Enhanced quality of life and capacity to take on employment are reported (Tyson et al 2010) with evaluations of pilot programs indicating that families of children with disabilities report increased wellbeing, resilience and independence (Robinson, Gendera, Fisher, Clements & Eastman, 2011).

However, the transition to an individualised funding model for young children with disabilities and their families demands that parents and/or carers be able to advocate effectively for their children and make informed choices about services and support. This necessitates families’ having access to information on best practice in early childhood intervention (ECI) which is both easily obtainable and in a form which is meaningful to them. Indeed, this need for reliable, understandable information will remain a constant throughout their and their child’s lives.

What is at stake here, then, is the capacity for families to use the funding available in ways which will maximise the benefits for their child and family as a whole. Beginning such capacity building as soon as possible after the disability is identified will have long term effects on family functioning and child outcomes as the skills learned are applied as the child moves from ECI to school to employment and comes to take responsibility for their own care and support. Parent and carer education is therefore critical.

This project is thus predicated on the belief that approaches to parent education, like ECI itself, should be evidence-based, follow best practice and flow from families’ stated preferences and requirements.  The projectalsoarises from a recognition that the main vehicle for communicating information about services and support is likely to be the internet. It is vital, if this is so, that websites are easily navigated and contain relevant and accessible information. Parents and/or carers are also increasingly using the internet to learn about their child’s disability and the options open to them for intervention. As a consequence of this, they also need to develop the skills to determine the credibility of claims made with respect to various interventions and treatments. Determining what families say they need to know and how that information should best be delivered is the crucial first step in what will be a life-long process of decision-making. It is with this that the present study is concerned.

Specifically, the research aimed to address the following questions.

1. What experience do parents who have a young child with a disability have of technology and using the internet?
2. How do parents who have a young child with a disability gather information about their child’s disability?
3. How do parents who have a young child with a disability learn about services and interventions that are available to them?
4. How do parents who have a young child with a disability make decisions about what services to access for their children?
5. What elements of a website do parents who have young children with disabilities see as central to the website’s effectiveness?
6. What do professionals who work with young children with disabilities understand to be the ways in which families of young children with disabilities access information and make good decisions for their child and family?

Lord, J., Hutchison, P (2003). Individualised Support and Funding: building blocks for capacity building and inclusion. Disability & Society, Vol. 18, No. 1, 2003, pp. 71–86 Lord, J., Kemp, K., Dingwell, C. (2006). Moving Towards Citizenship, A study of individualised funding in Ontario. Individualised Funding Coalition of Ontario. http://www.individualizedfunding.ca/Moving%20Toward%20Citizenship.pdf Robinson, S., Gendera, S., Fisher, K.R., Clements, N. and Eastman, C. (2011), ‘Evaluation of the Self Directed Support Pilot Second Report’, SPRC Report 10/11, prepared for the Department of Communities, Disability and Community Care Services Queensland. Spalding, K. (2007). Self managed care programs in Canada: A report to Health Canada. Department of Health Policy Management and Evaluation Faculty of Medicine, University of Toronto. Tyson, A., Brewis, R., Crosby, N. et al (2010) A report on In Control’s Third Phase: Evaluation and learning 2008–2009, London: In Control.