Research Studies

A Much Needed Headstart: Ensuring Early Childhood Care for Children with Disabilities

Intro: ASTHA & Its Approach

Twenty-five years ago, ASTHA started working against a thinking that children and persons with disabilities would remain at the peripheries of institutions and society and that they did not merit any rights but that their lives were to be managed by others. It was also believed that children and persons with severe and multiple disabilities were to remain hidden in the confines of the family

In 1993 ASTHA started with a very clear understanding that the most severely disabled person and child was going to be our first person and child and be at the centre of our work. Attempting to be a caring organisation we still fell short of an understanding of rights. This understanding evolved as the organisation grew in parallel as many momentous international and national events and thoughts changed. In the twenty-five years of ASTHA, the international arena changed dramatically with the international community getting together to discuss and finally bring for the UN Convention for the Rights of Persons with Disabilities. India ratified the convention in the year 2007.

From an institution based organisation, ASTHA evolved to be a community based organisation working in the urban slum camps of Govindpuri, Lal Kuan (South Delhi) and more recently the Okhla industrial areas, reaching out directly to children with disabilities, their families and later to the community itself. An important offshoot of this has been the cross-disability nature of the work where the organisation works with all.

It is in its work within communities that the organisation’s approach has broadened. While it has retained its primary work with children and persons with disabilities and their families, the focus and thrust has shifted to inclusion within the community and processes of development. Working within communities has enabled ASTHA to understand how important the context is in shaping strategies that will work for the development of the very young child with disabilities.

The other thrust of the organisation has been to collate and share information with families and persons with disabilities trying to answer the often asked questions of ‘where to go’ and ‘what to do’. In its focussed work with very young children with disabilities and developmental delays, ASTHA aims to empower families who are just beginning to ask these questions.

With a focus on building the abilities of the child, it works at the crucial job of providing the family and the major caregivers of the child with all the tools to enable the development of the child and to build their own resilience. It then widens its focus to gather all the resources in the community that can be used to support the child and focuses on the inclusion of this child and family in official institutions of society.

Urban slum areas are difficult areas for families to live and survive in. Physical inaccessibility, small and often ill ventilated homes, open drains and lack of sanitation and water facilities are just some of the hazards that families must contend with. In such situations families may have to deal with illness sometimes leading to early death, poverty, sudden loss of jobs in the informal economy along with the disability of the child. Our strategies and work with the child cannot ignore these situations and must respond to them.

At a larger level, the organisation focuses on taking the concerns of very young children with disabilities into issue based networks such as the Right to Food network, the Forces Network, child rights alliances and the Right to Education alliances that work towards policy and legal reform.

Some of the strategies used by the organisation in reaching out to very young children with developmental delays and disabilities are as follows.

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