Meeting Inclusion China - National Parents’ Network for Children with Intellectual Disabilities

At the Inclusive Education International Conference in early 2017, when introducing my PhD research, I mentioned how parents who agreed for their children to participate in the research wished that the research could eventually help improve the provision for more children and families. The manager of a Chinese DPO Rong Ai Rong Le, Ms Hong Li, introduced herself to me after the talk and connected me to their exciting work of formalising a national parents’ network for children with intellectual disabilities. In that Spring, they published the results from a survey that had involved a large number of parents across the country, showing the insufficiency of support for the inclusion of children with intellectual disabilities in education. They have been actively engaging policy-making: they held press release and submitted a proposal for policy change to the National People’s Congress.

I met Ms Hong Li again during my fieldwork. She explained that the idea of moving into rights advocacy was because the parents realised that they should not be the ones who provided services for these children. Before the norm practice of parents’ NGOs was to crowd-source funds from families themselves and then provided care, education or rehabilitation, when the public service was unable to meet the needs. Such model eventually was found to be unsustainable: after all, what would happen if parents grow old and become unable to look after their disabled children? Some parents thus realised that they had to pressure the government to establish structure and to deliver the services in need. The programme of the National Parents’ Network rolled out quickly, with hundreds of smaller parents’ group joining in in all areas of China. Together they felt that they were empowered to address the issues. They have been running many innovative projects, related to inclusive education and supportive employment. Nevertheless, challenges still exist in terms of how to effectively influence policy when very few politicians (people’s representatives) were happy to take their concern forward, and how to engage practitioners. I offered some advice for their work on the ethics of doing disability rights campaign in schools where stigma prevailed, and also encouraged them to consider involving children in advocacy work and to have more child-led activities.

Since then, I have been in regular contact with them. I was invited to the policy consultation meeting they organised after the revised Regulation of Education for Persons with Disabilities was issued. And I have also become one of the consultant for their on-going project, which was designed to promote inclusive culture in mainstream schools. In early 2018, they published results from another national survey, showing that many families were still denied access to mainstream schools, even if the Regulation stated a commitment to prioritise inclusive education. For the organisation, more work needs to be done and they also become clearer about the evidence that they need to inform policy-making and practice development. It has been truly a privilege for me to be given the trust so I could make my contribution to the exciting journey as a researcher.

Rong Ai Rong Le website: http://www.co-inclusion.org/