Distance Mentoring Model for Autism Assessments in the Indian Himalayas

Background:

Reductions in under five mortality rates has shifted global program and policy focus to lives that thrive and live with or without disability in most parts of the world. In the Indian Himalayas, identification and assessment of developmental disabilities in young children poses a huge challenge, and intervention therefore remains a far dream. With no developmental pediatricians in Uttarakhand, the Himalayan state of India, the program uses expertise from a qualified early development expert based in a high income country to train, support and supervise a team of local professionals in the field of Autism, for assessment and intervention.

Objectives: The model provides expert supervision and support in the local language and maximizes use of limited resources of time, money and personnel. The model depends on a strong mentorship capacity, committed time by professionals to assess, record, share and seek guidance, and deep relationship building which in turn strengthens the support between the family and the team.

Methods:

The program began with on site training on the use of new tools for autism diagnosis (ADOS and ADIR). The module initiated with training to build the knowledge base and was followed by multiple hands-on sessions on the use of assessment tools with families whose children were suspected to have autism. Multiple sessions with close supportive supervision were followed by the local professional teams conducted the assessments independently. The assessments reports were emailed to the consultant and video recordings were uploaded on the Internet using strict privacy settings. The local team received immediate feedback and timely support with diagnoses and intervention plans for the child and the family. Technical assistance also involved access to web resources, and training for parent groups. The consultant and the local team meet face to face twice a year to develop further insights, review complex cases, facilitate parent meetings, and training in advanced modules.

Results:

In six months, the team assessed, diagnosed and provided intervention support to fifty children with autism. The model did not need funding and provided on-site training support using new assessment tools and distance support to validate assessments and diagnoses thereafter to a team of local professionals for children with autism. Children and families receive the benefit of best practice interventions and specialist inputs that would otherwise not be available for them. While we understand the pivotal role technology plays in this program, we cannot undermine the value of on-site visits and face-to-face meetings.

Conclusions:

Though the technology is not complex, for local professionals to learn and use the video camera, email, whatsapp and youtube are innovations in their own right. This model can be adapted and applied to settings where there is a need for training and support. The distance-mentoring model can supplement the more traditional model of site based service delivery and support. The foundation is aiming to scale the model for children with cerebral palsy and Down syndrome.