Access to health and support services for families of children with disabilities in China Karen R Fisher and Xiaoyuan Shang Symposium on the World Report on Disability: Implications for the Asia and the Pacific, University of Sydney and the World Health Organization 5-6 December 2011

Outline Chinese disability policy context Access to health and support services Methodology Findings – information, supply, cost, location Policy implications for support policies Resources and contact details

Chinese policy context 5 million children with disabilities Overrepresented in vulnerability and disadvantage measures China Disabled Persons Federation, Ministry of Civil Affairs Developing, transition country  Changing values, less informal care  Government support systems only in developed areas  Free public health care is rare  Few additional support resources for schools

Rights to health and support China signed UN Conventions for children and disability Rights to service support  Information about child disability and support  Disability support, health and therapy  Children’s services and education

Use of services by disability and location

Need and use a service

Research questions Why do most Chinese children with disabilities not receive the health and support they need? What prevents families from accessing the services? What are the policy implications to support their rights?

Methods 2006 National Sample Survey on Disability – 1002 children National case studies – observation and interviews  8 children, families, school, social networks, organisations

Information about disability support Poor information for families about  Their child’s disability support needs – identifying, early intervention, expectations of rights  Disability support options – health, therapy, support  Children’s services options – education, activities Poor quality sources  Informal sharing, commercial interests Impact on access to support  Delayed, incorrect or no support

Shortage of services Urban/rural divide in local availability and government/family cost  Health  Disability support and therapy  Education and activities – inclusive/segregated Impact on inequitable access. Examples of  Rural families not even asking for child to attend school  Urban family income support and free services from birth

Affordability and poverty Lack of affordable disability support – cost borne by family Multiple relationships between disability and family poverty  Disability from poverty – access to basic needs  Poverty accentuating disability – cannot afford cost of disability support  Poverty due to cost of disability support and poor information about appropriate support

Policy implications Local context affects families fulfilling children’s support need Provincial differences in  Resources and policy implementation  Priority of support for children and families Requires central government resources and local community implementation to meet the needs of children with disabilities in China

Chinese social policy projects Disability policy projects Resources