'It's the system working for the system': carers' experiences of learning disability services in Ireland

Health Soc Care Community. 2009 Feb;17(1):92-8. doi: 10.1111/j.1365-2524.2008.00807.x. Epub 2008 Sep 17.

Abstract

The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers (n = 25) and representatives from national carer organisations (n = 6) in Ireland. These were people caring for an adult (18-30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Adult Children / psychology*
  • Caregivers / psychology*
  • Day Care, Medical
  • Female
  • Health Services Accessibility
  • Home Nursing / psychology*
  • Humans
  • Interviews as Topic
  • Ireland
  • Learning Disabilities*
  • Male
  • Needs Assessment*
  • Organizational Case Studies
  • Parent-Child Relations
  • Parents / psychology*
  • Persons with Mental Disabilities*
  • Qualitative Research
  • Residence Characteristics*
  • Respite Care
  • Social Support*
  • Social Work
  • Vocational Education
  • Young Adult