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Reaching out to make services accessible to children with CP in India

Satya Special School in India is ‘Reaching the Unreached’ through its home-based intervention program. It takes therapies, education and advocacy to where they’re needed most. The Reaching the Unreached project’s work providing Medical - Therapeutic interventions to children with CP has earned Satya Special School a World Cerebral Palsy Day 2018 Major Award.

The project

Operating since 2003, the Satya Special School provides education, healthcare and intervention programs to children with CP and intellectual disabilities in the territory of Puducherry, South India.

Satya’s programs are extensive and run across a number of branches. They include an early intervention centre, day school, physiotherapy centre, an inclusive play park, training and research, vocational training, as well as a mobile therapy unit and rehabilitation centres.

It is the Mobile Therapy Unit (MTU) and three village Rehabilitation Centres that make up a program called Reaching the Unreached.

This home–based intervention program aims to assist children in rural areas, many of which are facing neglect, isolation, stigmatisation and poverty.

“Children with cerebral palsy are amongst the most marginalised sections of society in India,” explains, Satya’s Director, Chitra Shah.

Consequently, the Reaching the Unreached program was initiated to improve the health and wellbeing of children with CP living in inaccessible rural communities.

The program is striving to ensure basic human rights are met, such as education, health care, nutrition and rehabilitation. It also promotes awareness, acceptance and social inclusion.

Any child (0 – 20 years) with CP living in inaccessible rural communities in and around the Puducherry region can access the program. Access to services, financial capacity and risk of neglect are all factors taken into consideration for beneficiaries. Children at risk of dropping out of mainstream school due to lack of assistive devices or accessibility constraints are also included.

Step by step

Getting this program off the ground required a number of processes that could ensure the home– based intervention services would be reaching those who needed them.

The project included:

  • data collection from government departments to map the prevalence of disability in the region
  • seeking permission from state government and village administrative officers to carry out both in-depth data collection and intervention services
  • a door-to-door survey to identify beneficiaries fulfilling the program’s criteria assisted by social work student volunteers from Pondicherry University
  • assessments and intervention planning undertaken by a team of rehabilitation professionals, including a physiotherapist, special educator, multipurpose rehabilitation therapist, social worker and a field animator
  • assessment for necessary assistive devices
  • identification and training of a co-therapist – either the child’s mother or other close relative – to carry out basic interventions between MTU visits
  • linking families into various government schemes to ensure they are receiving appropriate welfare benefits
  • implementation of intervention plan – depending on the child’s needs, the MTU attends once or twice a week to undertake required interventions such as physiotherapy, activities for daily living or education
  • routine dental and medical health checks undertaken in conjunction with the Department of Public Medicine, Pondicherry Institute for Medical Sciences and the Department of Community Medicine, Indira Gandhi Institute of Dental Sciences, Puducherry.

The outcome of these processes was the identification of 93 beneficiaries for the program from across 44 rural villages. Where possible children are linked with one of the three village rehabilitation centres to access additional interventions, education and vocational training.

For the dignity, as well as health and wellbeing, of the children in the program, Satya have also constructed seven disability-friendly toilets across a number of villages.

Overcoming obstacles

Due to the nature of its goals, the Reaching the Unreached program had to overcome many challenges in order to provide much needed care and interventions to its target group.

“The biggest barrier in implementation of this project is the myth that disability is the punishment of God,” explains Chitra.

These beliefs cause a lack of acceptance from families and the wider community. Worst of all, it often means children are left unattended, neglected and do not receive necessary care. This is exacerbated by the low socioeconomic status of many families in rural communities, where a child with CP is considered a financial burden.

Even with Satya bringing a free intervention service into homes, lack of cooperation from families continues to be an issue, with some families finding weekly visits too onerous and time consuming.

Satya also tackles logistical and human resourcing challenges to undertake this program. These include:

  • professionally trained personnel unwilling to work in rural and semi-urban areas
  • accessibility for the professional team to reach the beneficiaries home, including transportation limitations and lack of road infrastructure
  • high demand – current services reach less than 35 per cent of the target population
  • lack of ongoing funding
  • very high cost per beneficiary

“This dream project would not have been possible but for the support from Centro Italiano Aiuti all’Infanzia, Italy (CIAI) for funding us for the last eight years, and Enfants De Pondicherry for providing us with the mobile therapy vehicle,” says Chitra.