Examining the debilitating experience of form filling by parents of children with additional needs  in pursuing disability support services

Odhiambo, Calvin M.

Examining the debilitating experience of form filling by parents of children with additional needs in pursuing disability support services

Files

CalvinOdhiamboCARLReport2022.pdf(657.92 KB)

Published Version

Date

2022

Authors

Odhiambo, Calvin M.

Publisher

Community-Academic Research Links, University College Cork

Abstract

Social service provision for children with additional needs is a very integral part of a community social and welfare support system. While some family care providers obtain a sense of purpose and self fulfilment from caring for loved ones, they equally admit that the process of seeking support from the institutions mandated to provide the support has been challenging and depressing. In a move to support families raising children with additional needs, over time Ireland has established a disability support strategy comprising of financial support and services offered by different state agencies. However, the access to these services involves a bureaucratic form filling process. The forms contain questions intended to capture vital information that the relevant agencies purport to be relevant for planning and budgeting for the persons with additional needs. Family care providers are therefore expected to fill in different evaluation forms which capture different elements of either constant, progressive or episodic needs and personal demographic data. The We Care Collective approached Community Academic Research Links (CARL) at University College Cork (UCC) to seek someone to do research and collect data on the lived experiences of parents of the forms filling process. This was informed by the fact that their members have described the process as enduring and endless, which is a practical description of a debilitating experience characterized by long waiting periods to access services. The bureaucratic process has exposed the family care providers to an administrative burden of care and has been criticized for medicalizing disability assessment while ignoring a social and human rights assessment approach. This has generated an experience of stigma and quiet violence of bureaucracy in handling the forms right from the point of access. It is on this that this study seeks to examine the debilitating experience of form filling by parents to children with additional needs in pursuing disability support service from state agencies in Cork, Ireland.

Keywords

Form filling , Disability support services , Parents of children with additional needs

Citation

Odhiambo, C. M. (2022) Examining the debilitating experience of form filling by parents of children with additional needs in pursuing disability support services. Cork: Community-Academic Research Links, University College Cork.