Molly case shows children with disabilities falling through cracks in system

The Ombudsman for Children’s Office’s (OCO) report highlighting the deleterious effects of the lack of co-ordination by the Child and Family Agency, Tusla, and the Health Service Executive (HSE) for Molly and her foster family is a sad indictment of how the State responds to those whose needs do not fit within the demarcations of service providing agencies. Joined up thinking may be a rather passé term these days, but never has there been a better example of the lack of it.

There was always going to be a danger, in separating out child and family services from the HSE in 2014, that certain groups – including children with disabilities in State care – were going to fall through the cracks. Children with disabilities, whether fostered or not, are already fighting for scant resources, and this issue can only be further intensified when service divisions and barriers come into play.

One of the things that was particularly shocking in the OCO’s report was the finding that, despite their best efforts and, to quote, “exhaustive advocacy”, not even professionals working within the system were able to navigate access to relevant services and supports for Molly and her foster family.

This being the case, it is hard to see what hope there is for those seeking access to the system from the outside, including parents, foster families and people with disabilities themselves. The State has built a system that appears to pride itself on impenetrability and inaccessibility.

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The OCO’s report highlights the everyday realities of resource constraints, administrative battlegrounds, and lack of access to services, but it also speaks volumes about the State’s understandings of disability.

Despite legislative and policy moves to mainstream disability in Irish society (through measures such as Government departments developing sectoral plans under the Disability Act 2005, and the HSE’s efforts, through the Progressing Disability Services for Children and Young People initiative, to develop more coherent, co-ordinated and equitable services for 1-18 year olds), there still remains a perception that disability is a specialism owned by particular agencies in the health and social care arena, that “do” disability.

This is a perception which owes much to the legacy of Ireland’s residual welfare state, and the historical development of charitable organisations which took on responsibility for providing services to children and adults with disabilities.

Disability is part of the human condition, and service providers should think about it as an experience that cuts across all our lives in multiple, intersecting ways

Disability, though, is not an experience that can be pigeonholed, nor one that ends at the door of disability services; it is a universal part of the human condition, and service providers would do better to think about it holistically as an experience that cuts across all our lives and society in multiple, intersecting ways. Such thinking would suggest that there needs to be awareness of disability in all sectors of the health and social care system, and not just within disability-specific services.

What is also revealing is how the two agencies’ rigid adherence to their own procedures – articulated in Tusla’s case through the equity of care principle (we treat all foster children the same regardless of whether they have a disability or not) – obscured the needs and rights of Molly and her foster family.

Rights-based approaches to disability have long recognised that for children and adults with disabilities to experience equality with their able-bodied counterparts, sometimes they need to be treated in a way that recognises the difference of disability; that is, provided with extra supports or reasonable adjustments to enable them to participate in the same way as others.

As the OCO report and multiple pieces of research have highlighted, the additional costs associated with supporting a child with a disability are significant. In Molly’s case, however, these costs were not acknowledged in any systematic or coherent way by the two agencies.

Fulfilling the needs and rights of children with disabilities in foster care requires joined up, inter-agency approaches that have the flexibility to deliver personalised supports that place the child at the centre of service provision. While current disability policy articulates this need for flexible, individualised supports, Molly’s case illustrates just how far agency structures, administrative and communication practices are going to have change before these aspirations have any meaningful effect for many children with disabilities.

The OCO’s report provides a stark warning: by failing to develop a co-ordinated response based around a recognition of the difference that being a child with a disability in State care makes, the State failed Molly, and will continue to fail many other children with disabilities like her.

Dr Claire Edwards is a lecturer in the school of applied social studies, and director of the institute for social science in the 21st century (ISS21), at University College Cork