Family-centred services for young children with intellectual disabilities and their families: Theory, policy and practice

J Intellect Disabil. 2018 Dec;22(4):361-377. doi: 10.1177/1744629517714644. Epub 2017 Jun 22.

Abstract

This paper outlines the reported discrepancies between the aims of the welfare services in Iceland and the experiences of parents raising young children with intellectual disabilities. Prevailing views on disability and service delivery were also considered. A multi case study design was employed to reflect the situation in different parts of the country. Families of eight children with intellectual disabilities and professionals in three different municipalities formed the cases. The findings reveal a high convergence between the three cases with variations based on individual experiences rather than geographical location. Overall, parents praised the preschools but experienced support services often as fragmented and uncompromising. Particular components of the services were consistently regarded as hard to reach and not in accordance with the needs of the family. Cultural-historical activity theory is introduced as a beneficial framework for further study and system improvement.

Keywords: children; families; intellectual disabilities; preschools; services.

MeSH terms

  • Adult
  • Child
  • Child Day Care Centers / standards*
  • Child Health Services / standards*
  • Child, Preschool
  • Consumer Behavior*
  • Delivery of Health Care / standards*
  • Family*
  • Female
  • Health Services Accessibility / standards
  • Humans
  • Iceland
  • Intellectual Disability / therapy*
  • Male