OVER THE YEARS

The founding members of CARENIDHI, mostly professionals working with children with neurodevelopmental disabilities and parents, are from diverse disciplines (Medicine, Rehabilitation Sciences, Journalism and Special Education). Touched by disability in a personal or professional capacity and working in different settings (hospitals, rehabilitation centres, schools, homes, communities–social services), we felt the strong need to provide a forum for the interdisciplinary exchange of information and to facilitate dialogue between disciplines on a wide range of issues related to disability.

Central to the work embarked upon was the need to ‘care, share, learn, and develop’, to contribute to better service provision by careproviders, to encourage a better understanding of issues that have a bearing on the lives of children and young adults with disabilities and to reflect, with a spirit of enquiry and empathy, on the learning issues related to disability.

The first two years saw us active in the operational issues and in building the organization for the future programmes to meet the mission-vision. The initial endeavours of CARENIDHI included:

• Establishing ourselves as a registered charitable organization
• Brainstorming for innovative approaches to disability-in-development
• Networking with friends in the field for work in convergence
• Bringing in like-minded persons to strengthen our efforts
• Volunteering services to organize workshops for professionals and care-providing organizations and families
• Bringing out information material for parents
• Participating in advocacy events that involved persons with disability

The birth of our first major venture took place in 1999. A periodical for continuing professional education, Childhood Disability Update, was launched. This multidisciplinary journal was our way of reaching out to several careproviders and professionals with whom we could not directly interact. All of them are like us at CARENIDHI, who ask, from time to time, "What do we know and where do we go from here?" in our journey towards integrating disability into development. In a field requiring much exchange of information, the journal provides a forum for sharing knowledge and perspectives pertaining to developmental problems in children as well as facilitates dialogue between disciplines.

The Social Education Unit of CARENIDHI was developed in 1999 and 2000. The Student Network for Education and Health for All (SNEHA), the student wing of the organization, was formed as an extension of our work in Advocacy and Public Awareness for Disability Rights, Inclusive Education and the larger social issues associated with disability.

CARENIDHI’s aspiration to nurture a generation that truly believes in equal rights, opportunities and respect for all helped lay the foundation for the work of students between 9 and 21 years, including those with special needs, from regular schools. The thrust of the awareness programmes for the juniors was on ‘Knowing the FACT(s)’ and ‘developing empathy’; for the seniors it was ‘getting to ACT’ and ‘contributing to equity’. The student activities over the years extended to the community settings.

CARENIDHI members, working for the diffusion of useful knowledge about developmental disabilities, reached out to large numbers through educational programmes. At this juncture, we realized the importance of integrating our health initiatives into 'community development'. Our desire to ensure that people who live with and work with disabled persons have the know-how, and our work in resource-poor settings helped us address evidence-based care and training for professionals in the community healthcare set-up and special educators working with the families.

The first major research initiative we undertook was a population-based survey for the prevalence and distribution of childhood disabilities in four peri-urban resettlement community settings in Northern India, covering nearly 20,000 households.

Our work was enriched in the multi-centric research and training initiatives by the active participation of our partners—ROSHNI (Gwalior), ASHIRWAD (Ludhiana), ASTHA & AADI (New Delhi). The applied research initiatives of this phase, funded by the Social Initiatives Group of ICICI Bank, India, were linked to training in the community. The next phase of the study looked at associated variables in the community, with an emphasis on prevention and early intervention, even as the family-centric services for children identified in Phase I began taking shape.

The survey helped us develop strategies for further studies in disability to be linked to training for community-based care and early intervention in the subsequent phase

The work in that phase was also strengthened by grants from the Municipal Corporation of Delhi (Community Services Department) and the HPS Welfare Foundation, Delhi.

The emphasis of the health and rehabilitation activities has been on family-centred services for early intervention, general health, education and development of skills aimed at the school-readiness of the child.

For older children with special learning needs, prevocational skills and functional academics are linked to vocational training and lifeskills.

Prevention and early intervention as well as promotion of abilities of the children are the focus of work with families. The long-term needs and measures to meet them are the important areas for parent workshops and caregiver training in the community. The current studies in the community have developed preferentially to look at the subject areas of relevance to the community, while providing a basis for collaborative studies for determinants of childhood disability in the community.

• The involvement of the larger community is facilitated by networking with organizations for programmes in convergence for Community Based Inclusive Development (CBID) A major CARENIDHI initiative of this phase is the ‘Learning Resource Centre’ for we believe that inclusion is being a part of one’s own community.
• Today, disability is not seen as a separate agenda for social workers or disability rights activitists but as a natural part of larger issues such as education, employment environment, health, human rights and equity. CARENIDHI is poised to take the initiative a step ahead and develop learning resources in order to empower children and adolescents with different abilities for life skills education and ability enhancement

Our major support today comes from families and members of the community as we work towards a sustainable model (from evidence to empowerment). We hope to replicate the work in other marginalized communities and look at the scalability of the model.