A Report on Leading a Life of Dignity in the Post-COVID World

The Sarvodya Collective has published a report ‘Leading a Life of Dignity in the Post-COVID World: Learning from the lived experience of Intellectual and Developmental Disabilities’ on the occasion of International Day of Persons with Disability (IDPD) 2021.

In line with the theme of this year’s annual observance – Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world – the report brings forth the voice of the community to highlight ways in which the pandemic has impacted their lives, bringing a whole new set of urgent and worrying issues whilst exacerbating existing challenges and recommends ways in which we can build back better, centered on the voice of people with Intellectual and Developmental Disabilities (IDD).

Recommendations related to different aspects of the lived experiences of people with IDDs

This report offers a qualitative look into the experiences, challenges, and needs of the Intellectual and Developmental Disabilities (IDD) sector in India. Given that IDD itself has many overlapping definitions, the scope of the research is overarching and includes aspects encompassing all disabilities including intellectual disability. The report is based on preliminary research in the sector and is designed to be wide rather than deep in its approach. The intent is to present the challenges and needs of the IDD sector in India through the lifespan of a person with IDD. For the scope of this research, The Sarvodya Collective have specifically worked with people with Intellectual Disability, Down Syndrome, and ASD as well as their caregivers, and the organizations in India working to cater to their needs.

Capturing the voices of people with intellectual and developmental disabilities and their families (parents and siblings) is an important task that needs to be taken up to create consciousness in society. It seems ironic that those who need the most support are the ones who get neglected and marginalized in a society simply because they are not like the majority.” Dr. Shanti Auluck, Chairperson and Founder, Muskaan PAEPID

Some macro-recommendations include convergence between government departments and policymakers, employment of strategic advocacy, acknowledgment and exploration of the intersections in the community to provide more nuanced solutions. In addition, there are recommendations for building formal forums and spaces for individual and ecosystem support as well as using the potential of tech and tech-enabled solutions for capacity building at scale.

Eight key issues of the IDD sector in India

The report explores eight key issues of the IDD sector in India. It presents an understanding of the existing challenges heightened by COVID-19 as well as potential recommendations which can alleviate some of them in a post-COVID era.

1. Coming to terms
2. Formal recognition
3. Caregiving
4. Accomodation versus Inclusion
5. Finding meaningful vocation
6. On the frontline
7. ‘What after Us?’
8. COVID-19 Pandemic and IDD

This report attempts to highlight the various facets, gaps, and challenges that exist through the various life stages of people with IDD and their caregivers. The COVID-19 pandemic has not just brought on daunting new challenges, it has also magnified those that existed, bringing to the fore the already glaring gaps in the IDD ecosystem.

Download: Report – Leading a Life of Dignity in the Post-COVID World