The child with developmental disabilities: The effects on the whole family. What do the families really need from the ‘early intervention’ professional system?

Abstract

This paper is based on the premise that the current services delivered to children with developmental disabilities and their families in Wales are in need of revision in order to fully support the families to then be able to support their children. Currently services use a medically dominated approach in trying to ‘fix’ these disabled children and are lacking regard for the emotional and psychological impact on the families. The author comes from a position of having worked with these families as a clinical psychologist for over 20 years and shares with the reader things that her lived experiences tell her matter to these families and what families have said matters. There are ‘extra’ demands of looking after a child with developmental needs and in managing oneself in relation to a complex set of professional demands (services). In relation to this, there are a complex array of emotional experiences and dilemmas that parents are often fluctuating between. Six key themes have been developed which potentially form a model to think about some of the dynamics for families in these situations; Denial v acceptance, Guilt v forgiveness, isolation v support, fear v courage and anxious thinking v reimagining the family story. This paper provides the reader with a practical and strength-based model for service delivery to support children with developmental disabilities and their families. The new model of care is about helping families ‘to come to terms with’ a condition that cannot be cured. The new vision is about adaptation, re-framing or seeing from a different perspective, that is, a ‘fulfillment in new dreaming’. Families must adjust physically, psychologically and practically to living with limitations which can be severe and uncertain at times and may not be resolved. Two main principles that should be followed: 1. Caring about what matters. That is to say addressing a child’s developmental disabilities within the broad context of the child and family’s lives. Parents need space to acknowledge and process their feelings without judgement, with professionals and peers who have ‘good’ understanding and empathy. 2. We the people. Health care should become the work of we the people not we the professionals serving the rest of the people. At the heart of it is the orientating ideal that captures what the work is about – well-being of families. The principles of the model being to engage a resource that is largely untapped in our strained healthcare system: the knowledge, wisdom and energy of individuals, families and communities who have a child with developmental disabilities/learning disabilities in their everyday lives. These families are no longer simply consumers of services who respond to requests to ‘fix’ disabled children. The author describes what she is doing to develop services including the development of Early Positive Approaches to support (EPAtS). The author also considers some issues that get in the way of developing this new practice smoothly. Summary A new way of looking at and considering what is important in the professional system supporting children with developmental disabilities and their families.