Back in the UK after my 3 months working with the Handimachal project, my head is still full of it!
Apart from supporting the ongoing work of the local therapy team, my particular task agreed with Dominique Dufau had been to contribute to the development of the outreach programmes of the project and to encourage further networking with local and regional services.
Since the beginning of March when I first arrived much has happened. As Shruti More, the local Occupational Therapist (OT) described in the last Blog, seven community-based rehabilitation (CBR) workers have been trained and three excellent people have been appointed as community support staff covering the rural area served by the Unit from Kullu to Manali. Their training lays the foundations for a more comprehensive system of home intervention for local children with disabilities and will provide greater support for their families. The new CBR workers have been provided with a core training put together by Shruti, and ably supported by the special educator Shakuntla. The training represents a convergence of current thinking and evidence, and provides therapy resources that underpin community-based best practice world-wide.
The new CBR workers have had a huge amount to learn and take on board. I am sure that with time they will build up invaluable experience and resources to complement and support the local therapy team. The physical environment of the Kullu Valley, the pressures on local families and just the mountain weather - all confirm the need for there to be a focus on a community-based service. This focus is essential in order for the needs of local children with special needs and their families are to be effectively met.
Recent research is showing that careful adaptation of the environment of a child with a disability can be as effective as trying to change the child (Law et al, 2013)(1). Certainly environmental adaptation is a key part of any intervention with a child with special needs. We need to focus on providing supportive equipment for children with cerebral palsy, such as the standing frames and special chairs seen here and made together with local carpenters. We need to educate families and demonstrate to them within the context of their own homes, how to help their child develop everyday life skills, for instance to eat and drink safely, and communicate even if they cannot speak.
| Standing frame: Assessing the child's ability |
to gain autonomy of the upper body and strenghtening
his lower limbs
| Special chair: a new world of opportunities |
offered to the child, and some rest for the mother!
Working closely together with CBR workers will make the Handimachal project more sustainable. Knowledge about disability will be more widely shared within the community while the therapy team can provide a much needed ongoing regular overview of what is working, what is not working and what the child and family need next.
More regular links and networking opportunities with Dr Sheila, and via Ben Oni, with the Mumbai based ‘All India Alliance for Inclusion’, will also help the Handimachal Unit strengthen its support structures.
While it was very challenging as a UK OT to understand how to effectively work at the Unit, it must be exceedingly difficult for the local therapy team to accommodate the ideas of the foreign therapists and APA workers who come to volunteer but have little understanding of local conditions! I think we allshifted our ground. In my case I know I did, gaining new respect for the challenges of working in this environment.
Working in the community, for the community
I am hopeful that where I have offered new information and resources considered by the local team to be of value or can be adapted so that they are, that this information becomes ‘owned’ . Only then will it be brought into use by the local team of therapists and then shared with the CBR workers.
I very much look forward to following the Handimachal Blog and hearing how the CBR continues to grow and flourish based on recognised evidence and on the experiences of shared best practice, so that the needs of children with special needs and their families living in the Kullu Valley can be fully met.
OT volunteer, March-May 2014