The WHO disability report mentions that 5.1% of the world’s children live with moderate or severe disability and a prevalence of 0.4- 12.7% is reported in low- and middle- income countries. India is home to 25-35 million children with disability. Half or more of these children would not have access to any early intervention services.
Early intervention is the introduction of planned programming in order to alter the anticipated or projected course of development. Early intervention services are recognized as crucial in mitigating and sometimes preventing developmental disabilities, have a positive influence on the developmental outcome of children and families with disabilities and the effectiveness of community-based and family centered programs is proven. Services for early intervention are rare in India and non-existent in the rural areas. Affordable, accessible services are unavailable in most parts of Uttarakhand, the Himalayan state of India.
The Latika Roy Foundation is a voluntary organization in India, working with children and adults who have developmental and other disabilities. As a resource centre for people with special needs, the foundation provides early intervention services, education, livelihoods development, training and awareness.
The project elaborated in this paper follows on from Gubbara (Balloon in Hindi) an assessment center in a government hospital, to provide the local services parents are now demanding for their children. Gubbara is based at Doon Hospital, the state’s tertiary level health facility, and since three years has assessed almost 1000 children and provided them with home plans. Gubbara’s unique assessment program – free, comprehensive, high quality – is the state government’s first initiative in special needs. It has created a new demand for ongoing early intervention services in Uttarakhand. The project provides Early Childhood Care & Education (ECCE) to vulnerable children by training parents and area health workers, making their social/educational inclusion more feasible.
Following two successful years of Gubbara, the foundation initiated a comprehensive program for special children and their families in Dehradun district of Uttarakhand. The 18 month pilot project is funded by Sight Savers UK. The program identifies and assesses children in the area, at-risk for or having developmental delay and provides follow up services in the community. Recognizing that health personnel play a critical role in guiding the developmental aspects of the early intervention, training at all levels of health workers is underway. The community-based rehabilitation program includes home visits to provide early stimulation programs and training to parents and caregivers. The beneficiaries are the families of children with multiple disabilities who have attended Gubbara. They showed initiative in seeking out advice and attending a 5-day assessment program– now they are requesting follow-up services close to home. The approach was chosen bearing in mind families’ inability to travel any distance to avail of therapy for their children; as well as limited funding and acute scarcity of professionals.
A multi disciplinary team consisting of a physiotherapist, a special educator, a child development aide (CDA) and an awareness coordinator visit the Community Health Centres (CHC) in the four target blocks within the district twice in a month. They provide follow up services for children assessed and identified to have a developmental disability or delay, identify new children from the area referred by field level health workers, and have meetings with parents to provide hands-on-training to manage their children better at home. Children are assessed for progress based on Gubbara evaluations and targets; parents are informed better about Gubbara-set goals and are trained in appropriate exercises and skills for their child’s needs.
Accredited Social Health Activists (ASHA) who form the backbone of India’s flagship health program, National Rural Health Mission (NRHM) were trained over four months in early intervention and became master trainers in the program. They in turn trained many more health workers in a cascade design and almost 900 filed level health workers were trained over a period of one year in the district. They helped identification of new children in the target areas and referral to Gubbara for assessment.
Most poor people don’t identify disability as a priority. Their concerns are water, livelihoods, fuel and fodder. Disability programs are seen as agency driven – some Good Samaritan’s idea. Our approach is parent-inspired, -sustained and -driven. Parents who have come to Gubbara for a one-week assessment are the entry point. The strengths- based approach builds on what parents already have: 1) the desire to do the best for their children and 2) first-hand knowledge about what makes their kids tick. The program works with them to determine their most pressing concerns and design programs to address them. They are trained – hands on! – to give their children the care, therapy and education they need and to set the goals they will pursue between visits.
Through these motivated parents, the project also engages with the established government network to intensively train health workers to supplement the parent-based therapy provision. Parents – the most concerned people in a child’s life – act as project monitors. Monitoring is the most difficult aspect of any large-scale initiative. The rights- based approach trains parents to understand that no one is doing their child a favor; access to services is their right and parents have a responsibility to see that they get it. Parents are trained to monitor health workers’ attendance, focus and skill delivery. They review their child’s therapy goals and progress with health workers. The child-monitoring booklet was developed to encourage a participatory monitoring of children’s progress by the trained health worker and the parent. Training to use the booklets was intensive and was repeated at each monthly meeting. Home visits were conducted to fine tune the process.
Children have happier, more fulfilling, and more productive lives through receiving appropriate therapy; parents are better able to cope with the challenges of raising their child; health care workers receive new skills, which also benefits the typical children in their caseloads.
At the recently held National Conference on Intellectual disabilities conducted by the Department of Disability Affairs the follow up project was greeted possibly as the only project in the country which provides services for children with special needs at the community level in government health facilities. The sheer numbers of new children identified and the eagerness of their families for services have been instructive and inspiring. Now when we make our case to government officials on the urgency of the problem and the desperate need for Early Intervention, we are more convincing; we are not arguing from a WHO report or from extrapolations: we have real-life stories, photos and data to share. We’ve seen the reality with our own eyes.
With the recently launched Rashtriyia Bal Suraksha Yojana (RBSK) program we hope to integrate with them at all levels including training, service provision, human resources, monitoring and streamlining health provision for children. By catering to the most marginalized and excluded children, the foundation believes that planning for the most vulnerable will make the world a better place for everyone. Early Childhood Care and Development (ECCD) is essential to achieving MDG 2 and improving access to health services for children with special needs could prevent and reduce child mortality and reduce social exclusion caused by stigma thereby helping positively towards attainment of MDG 4.