Tags: children with special needs, disability, early childhood intervention
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From Assoc. Prof.? Christine Johnston
I am not embarrassed to admit that, like the Prime Minister, I was teary-eyed on seeing the legislation for the establishment of DisabilityCare pass through the parliament with bi-partisan support. I had not expected it would happen so quickly and so decisively. But that very speed brings with it some questions and possible dangers which are worth thinking about as the euphoria settles and the launch begins.
It is a clich?, but nonetheless true, that the introduction of DisabilityCare Australia is a game changer for all those who have a disability (or who will acquire a disability). At its centre is recognition of the life-long impact which a disability has on individuals and those around them; their families, friends and colleagues. But it is more than that. It is a fundamental acknowledgement of the rights of those with disabilities to participate in the community and to have available the supports necessary for them to do so. Most important is that it seeks to place control in the hands of the user. Individualised funding means that services are targeted and chosen by the person with a disability or, where appropriate, by their advocate. It will, then, essentially provide a system where the individual purchases the services they want and need. This will have profound consequences both for the individual and, potentially, for the services that currently exist.
My particular interest is in early childhood intervention and how individualised funding will work for families who have a young child with a disability. Imagine that your child has just been identified as having a disability. You know little about your child?s disability and even less about what interventions might be useful. However, you now have funding available to you to buy services for your child and family. On what basis do you do this? How do you learn about your child?s disability? And, just as importantly, how do you decide what interventions will be most useful at this time in your child?s life?
These questions are not new and they are not ones that arise because of individualised funding: they exist now and are experienced by all families at the time of identification and/or diagnosis. Indeed, it can be argued that the experience of adults learning that they have an acquired disability will be similar. The difference is that families now engaged with early childhood intervention services generally have access to professionals who can enable them to make these decisions.
Early childhood intervention is predicated on the philosophy of family-centred practice (Dunst, 2004; Dunst & Trivette, 2005; Moore, 2010). Rather too simply put its basic tenets are these: parents are the experts on their family and child, services should be coordinated and family-driven, and disability affects not only the child but the family. An individual funding model therefore fits well into this philosophy. However, there are some provisos.
In a family-centred model, the approach to intervention should largely be one that utilises natural learning environments and opportunities (Dunst & Bruder, 2002). Furthermore, the approach to service delivery should ensure that the child and family are not overwhelmed by the number of professionals with whom they have to deal: a transdisciplinary model which utilises a key worker to coordinate services and advocate for the child and family is therefore seen as optimal (Drennan, Wagner, & Rosenbaum, 2005). Families can, of course take on this role if they wish. What is unclear at present is whether case managers skilled in early childhood intervention practice will be available to families who have a young child with a disability under the new model and how their services will be paid for.
This is a crucial consideration. Anecdotal evidence from parents who have been using individualised funding suggests that they may take on this role themselves since to bring the professionals (generally therapists) together will be an additional cost and subtract from the monies available to them for direct intervention for their child. For some families this is an appropriate solution, for others it may be yet another pressure in an already stressful situation.
Moreover, in a model where the family purchases services how do they make decisions about what intervention approach should be taken and who they should engage to do it? The importance of evidence-based practice, not just in early childhood intervention, but in medicine and education is well accepted. ?Considerable thought needs to be given to what information and supports families need in order to be able to judge the credibility of claims for various approaches to intervention and the validity of information posted on websites. The provision of a list of approved providers by DisabilityCare will go some considerable way to solving this problem but it will not solve it completely. Families need access to experienced and skilled early childhood intervention professionals who can assist them to make sense of the plethora of information and possibilities.
My conversations so far with families who have a young child with a disability have led me to the conclusion that they, at least, are assuming that individualised funding will occur alongside their access to dedicated, multi-disciplinary early childhood intervention services. They have some justification in this assumption as this is what occurs with the Better Start and Helping Children with Autism funding. Whether this will continue seems far from clear at present. Will these services also be fully dependent on attracting funds directly from families and, if they do, will families be prepared or able to pay for coordination of their services and assistance with choice?
My other concern relates to the early childhood intervention services themselves. In those services we have a wealth of experience, talent and expertise. And, we have a means of inducting new therapists, educators and other allied health staff through their being mentored by expert staff. We cannot afford to lose this. Ways must be found of utilising this knowledge; the role of early childhood services must be guaranteed if we are not to return to earlier approaches which are far from family-centred.
DisabilityCare offers extraordinary opportunities but, as suggested, there are inherent questions that must be addressed. The launch of the program in July will provide the vehicle for robust discussion and evaluation. We must take up that opportunity and work to make DisabilityCare the best it can.
References
Drennan, A., Wagner, T. & Rosenbaum, P. (2005). The ?Key Worker? Model of Service Delivery. Keeping Current #1-2005. Hamilton, Ontario: CanChild Centre for Disability Research.
http://bluewirecs.tzo.com/canchild/kc/KC2005-1.pdf
?Dunst, C.J. (2004). An integrated framework for practicing early childhood intervention and family support. Perspectives in Education, 22 (2) 1-16.
Dunst, C.J. & Bruder, M.B. (2002). Valued outcomes of service coordination, early intervention, and natural environments. Exceptional Children, 68 (3), 361-375.
Dunst, C.J. & Trivette, C.M. (2005). Measuring and evaluating family support program quality. Asheville, North Carolina: Winterberry Press.
Moore, T. (2010). Revised Literature review for the DEECD Early Childhood Intervention Reform Project. Melbourne: CCCH.
Christine Johnston is Director, Engagement and International in the School of Education at the University of Western Sydney
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