Rehabilitation and Education Promotion Project for Children with Cerebral Palsy

Background

The Rehabilitation and Education Promotion Project for Children with Cerebral Palsy was initiated in 2009 by the Norwegian Missionary Alliance with China Disabled Persons Federation (Social Service Guidance Centre) with the overall aim to develop holistic rehabilitation services in eight counties of China.

After the first phase’s external evaluation (2013), it was agreed to continue the project in five counties, focusing on consolidating the holistic approach and sustainability of the service platform. Specifically, the second phase should improve access to both professional rehabilitation therapies and educational opportunities, for all children with cerebral palsy, including those children with more severe disabilities

Purpose/objective

The purpose was to assess the overall results in the project that is ending. The evaluation objectives were to:

1. Review the project outputs and outcomes referring to the project documents;
2. Summarize the impacts of the project in both positive and negative aspects.  

Methodology

The evaluation used a participatory framework, with strong attention to observation, discussions and interviews with stakeholders including children. Prior to the onsite evaluation, the project management team sent the relevant background documents for review.

Each visit was arranged appropriately and was conducive to understanding the key issues. All stakeholders were open to questions, and many different activities were observed and discussed frankly.

The project files were all open to assessment. However, there were numerous limitations, including the brief duration of each visit, resulting in snapshot views of many activities. For example, only two county schools were visited, and in only two counties, did we visit homes, while in the other three counties observation and interviews were done in the rehabilitation centres. The visits were selected mainly by project staff for convenience, resulting however in potential bias and lack of understanding of the whole picture.    

In view of the above, the following evaluation report represents only what the evaluators observed and identified in the short time available, and thus, is based on an incomplete understanding of all the complex factors involved. It is clear that some issues are not addressed, while others may be only partially explained by what was found during each short visit.    

Key findings

This final evaluation of the second phase concludes that this is a very successful project bringing opportunities to many children with cerebral palsy and their families; capacity building for all stakeholders, & developing good practice for dissemination, policy development and future research.  

It is noted that Phase II has emphasized the social and educational integration of the children, instead of only focusing on “fixing” the children’s physical issues. All five counties demonstrate this balanced and holistic approach to services for both children and their families. Significantly, children with severe and complex disabilities have been included in most activities, and are no longer neglected due to lack of knowledge or skills. In addition, the respective resource centres have worked effectively to support the county project sites.  

The project goals were achieved or surpassed in all counties, although the service characteristics vary. There has been a remarkable co-operation between the disability sectors (County Disabled Persons Federations) and the health and education services, demonstrating combining of resources and mainstreaming of services according to local conditions and resources. 

The project experiences have added to and promoted policy development, while the project counties have also used local and national policies to their full (especially early screening for delayed development and educational policies). Sustainability of the services is ensured through use of an inclusive developmental approach; that is inter-sectoral collaboration and mainstreaming of services.

Recommendations

Recommendations for the common challenges include to explore methods to:

1. maintain an effective and dynamic CBR service provision system, especially for children with more complex disabilities and for children living in remote areas through clear understanding and funding for resource centre role;
2. enrich the educational experiences of children and enable their progression to the child’s maximum potential;
3. increase relevance and practical utility of expert’s visits and the referral system by having clearer expectation of what is important to each child;
4. improve and extend the use of assistive technology as a way to increase a child’s activity and participation levels in home, school and community;
5. develop appropriate services for adolescents as they become more independent and prepare for adulthood;
6. mentor family mutual support groups to move from social gatherings to more complex issues facing families;
7. explore and debate the balance and complementary roles between medical rehabilitation therapies (including surgical interventions) and a child’s comprehensive developmental needs;
8. develop the role of Occupational Therapists to work with families, teachers and children in the areas of daily living skills, education, and community skills.  

Detailed recommendations are made within the report for each county. In general, we suggest the three Sichuan counties should focus on capacity building of own staff, manage the balance between medical rehabilitation and the children’s other needs, consider how to increase participation level of children in education, and start planning for adolescent services and preparation for adulthood.

For Eshan County DPF, it is essential to strengthen links with the primary health networks for early identification of children with delayed development, and with the education sector to improve communication between teachers and rehabilitation workers.

For Sichuan, the key challenge is how to ensure that all children with cerebral palsy (and other disabilities) have access to rehabilitation and education services, through activating their CBR network. 

Eshan and Wei Counties both continue to need strong support from their resource centres and city and provincial level experts. The Sichuan counties are already more independent, but they need support to set up feasible and relevant quality service standards, based not only on output (they are achieving already) but with utcome indicators related to children’s function and participation.  

While the counties are facing challenges they are all optimistic about future development and quality improvement of services. The family members and children are fundamentally satisfied. Since their lives are changing, the young people will now expect and hope for more opportunities in their lives and will no doubt look for further service development in areas of assistive technology, livelihoods training and support. There are many new opportunities for exploration, pilot projects and research.