Journal of Intellectual Disabilities, Ahead of Print.
Children with intellectual and developmental disabilities have historically been at high risk for social exclusion and other vulnerabilities. The Western world has shifted away from institutionally-based services and toward community-based services that allow for greater social inclusion as well as for meeting individual developmental needs, and China is beginning the process of exploring how to make this shift. In 2014 and 2015, a situation analysis examining the lived experiences of parents of children with disabilities in Zhengzhou, Henan, China, was undertaken. Perceptions of strengths, needs, opportunities, and barriers experienced by parents of children in intact families (i.e. families where children with disabilities remain in their birth families) were explored by means of parent interviews and focus groups. Families identify experiences of stigma and acceptance related to traditional and alternative social constructions of intellectual and developmental disabilities, and how they use social networks and information-sharing to help develop community-based services.