Transforming the System of Care for Children with Autism in Post-Soviet Kazakhstan

Background:

Over the past thirty years since the collapse of the Soviet Union,the system of care for children with ASD in Kazakhstan, a post-Soviet state in Central Asia, has been undergoing major restructuring. Autism was not included in the Soviet classification of psychiatric disorders; instead cases of ASD were registered and treated under other names (e.g., oligophrenia, schizophrenia, mental retardation). The Soviet system of care for children with autism was characterized by the dominance of a medical model of disability, in which the institutionalization of children with special needs was the main mode of care provision. The post-Soviet child welfare reforms include the development of community-based care and inclusive education for children with autism.

Objectives:

This study has three main objectives: (a) to map out the transforming system of healthcare, educational, and social services for children with ASD in Kazakhstan; (b) to examine gaps in the provision of healthcare, educational, and social services for children with ASD from the perspectives of family caregivers of different ethnicities; and (c) to identify provincial commonalities and differences in the provision of care for children with ASD.

Methods:

We employ an exploratory qualitative research design using purposive sampling procedures and utilizing two sources of data: (1) 8 focus groups with family caregivers of children with ASD (56 participants in total); (2) 16 in-depth interviews with professional service providers for children with ASD (doctors, psychologists, educators, etc). The study geography includes 6 urban locations in different provinces of Kazakhstan, including two major cities of Astana and Almaty and 4 smaller towns. Focus group data were transcribed and analysed using open coding and axial coding procedures (Charmaz, 2000). Interviews with service providers were analyzed using a framework analysis method (Ritchie & Lewis, 2003).

Results:

This analysis points to the evolving and fragmentary system of governmental and private services for children with ASD. Recently introduced services are often inaccessible or unaffordable, from parents’ perspectives. The development of services in small towns is lagging behind the big cities. The lack of agreed upon diagnostic criteria of ASD leads to multiple diagnoses and the delayed detection of ASD. Once a child is diagnosed with ASD, parents are rarely offered professional guidance regarding the planning of care for the child and services available in the community. Furthermore, parents face barriers to accessing special education, while inclusive education programs for children with ASD are insufficient. There are also barriers to accessing limited public benefits and social programs for families. Better-off families seek private services and pay out of pocket, whereas poor families can only rely on limited public services. Finally, parents with autistic children face stigma and isolation in the community.

Conclusions:

The study points to the gaps in the provision of healthcare, social and educational services for children with ASD and develops policy recommendations. The study also offers important insights into the challenges to the development of care for children with ASD in a post-Soviet context.