Dr. Pauline Cullen:

Apart from the financial cost there is a whole literature that looks at the notion of the structural burden of what is involved in navigating not just the form filling but also the pressure that is placed upon the carer in a very individual way to record the cost of care and then to communicate that in ways that fit into the bureaucratic requirements. We heard this morning from Ms Thyne on the complexity of care, and certainly the qualitative research revealed this in clear terms. There is an unpredictability to care and there is also a routinised element. It can be very difficult to translate and communicate that information into the kind of bureaucratic metric that is required for assessing carer's allowance.

When we talk about the financial side that is the kind of cost we just need to keep in our minds. It is a cost to the people administering it as well. In that merging of knowledge space we talked to front-line street-level bureaucrats who are involved in that assessment. They did communicate the difficulties they had sometimes in trying to understand and translate that complex equation of care work into the metrics that they were confronted with. They had difficult choices to make sometimes. There is also international literature, particularly in the Canadian case, that talks about the notion of tasking people within the State bureaucracy to work as navigational supports. The work done by Family Carers Ireland is amazing in this regard, along with other civil society organisations. They are working as navigators and trying to be the interlocutors between the carer and the State. There is really good practice there on the systems where they have looked at releasing folks working within the State machinery from that burden of assessing those kinds of metrics to do more useful kinds of work that is supportive. The power of that, to offer a recognition to carers of their worth and value is something that cannot get lost when talking about the costings. That is enormous: the notion that they have worth, that they are recognised, that they are visible, and that the State is responsive and reacting to their needs in this kind of nuanced way outside of the metrics we know are embedded in a very long form. There are other systems, and perhaps Mr. Gough could speak to it as he has looked at this. In the Finnish system there is a four-page form - at maximum - that one fills out. In the Irish context it is multiple forms and multiple documentation. That burden on carers is complex. It is not just time, it is also emotional investment, along with the waiting and the uncertainty. We also do not know how many people cannot face the process, are suppressed and do not apply but who need that support. They cannot face the intrusion or they have difficulty with documents or even with literacy. There is a disadvantaged group of carers out there that are quite minoritised and marginalised who would find that entire process itself very challenging. Then they disengage and their needs are not being met either.