Disabling Intersections: Challenges Facing Children with Disabilities and Their Families in Rural China

Background and Purpose: There are at least 5 million children with disabilities (CWDs) in China, and more than 80% of them live in rural areas. Since China ratified the United Nations Convention on the Rights of Persons with Disabilities in 2008, social services for persons with disabilities have been on the rise, but mostly in urban areas. Because rural areas are typically disadvantaged socioeconomically, and because working-age adults have migrated from rural to urban areas for work in great numbers, rural CWDs may face profound challenges such as poverty, neglect, and lack of services. However, they and their families have been largely sidelined in research and policy discussions. This study thus explores the needs and challenges facing CWDs and their family caregivers in rural China in relation to existing social services and policies.

Methods: Based on snowball and purposive sampling, in-depth, semi-structured interviews were conducted with family caregivers of 81 CWDs (ages 6-17) in four rural counties located in East, Southwest, and Northwest China, respectively. Brief interviews were also conducted with those children to get their perspectives. At each county, important stakeholders such as parent leaders, school teachers or principals, rehabilitation professionals, and government officials in charge of disability issues were also interviewed for their work and the social service system for the target population. Interviews were coded thematically following principles of grounded theory.

Findings: Interview data shows that rural CWDs face challenges in different life stages. Their parents’ lack of healthcare access and literacy has often led to or aggravated their impairments. Because of labor outmigration, many CWDs are cared for by their grandparents who feel incapable and unsupported for such tasks, and some children have been left alone for periods of time. While the government has started subsidizing rehabilitative services for CWDs, quality services are often lacking, and older children who age out of eligibility face service cliffs. Because mainstream schools either deny admission or fail to provide accommodation, families may choose to send CWDs to special boarding schools that are far away from home. Coupled with the predominance of grandparenting, this often results in a lack of communication and collaboration between families and schools, as well as low education quality. Physical barriers and social stigma mean that CWDs and their families do not fully participate in local communities. Whether at home or at school, CWDs typically do not receive training on independent living. Because of the hollowing out of rural economy, most caregivers do not have any expectations for those children’s future other than “getting by” with family care and welfare subsidies.

Conclusion and Implications: Findings highlight how barriers around disability and socioeconomic disadvantages in rural areas intersect to pose significant challenges to rural CWDs and their families. To improve their wellbeing, a systematic approach should be taken to improve local communities’ service infrastructure, attitudes toward disability, and economy as a whole, as well as to educate and empower families in supporting their children.