A special Educator is collecting data from the parent of a child with deafblindness using the Mental Health Screening Checklist developed by Sense International India.
Courtesy of Sense International India.
During the COVID-19 pandemic, Sense International India (SI India) conducted a small questionnaire-based study with adults with deafblindness and their families to better understand how they were coping mentally and emotionally with the challenges of the pandemic. Many reported emotional or behavioural difficulties, such as feeling lost, unable to connect, and tensions with their families. Family members increasingly requested specialist mental health supports for children and young people with deafblindness.
Consequently, SI India took a strategic decision to prioritise the mental health of persons with deafblindness as a new area of work.
They started by increasing awareness among special education teachers and CBR workers about mental health and reviewed existing research on the topic. However, there was not much literature or research on the mental health of persons with deafblindness.
SI India initiated a pilot project in April 2022 to better understand the existing mental health issues that children and young people with deafblindness experience. This two-year pilot project, underway at the time of drafting this report, aimed to benefit 1,000 persons with deafblindness across 22 states in India.
SI India developed a screening checklist influenced by the World Health Organisation’s (WHO) Five Well-Being Index (WHO-5), WHO’s self-reporting questionnaire-20 (SRQ-20), and other tools available and considered the communication barriers and behaviours specific to persons with deafblindness. To address the language barrier, the checklist was translated into various regional languages. The screening checklist used a five-point scale and covered five key aspects, including:
SI India trained CBR workers and special education teachers to use the screening checklist in schools, rehabilitation centres, and in the community with children and young people with deafblindness.
The next stage of the project will involve analysis of the screening checklist and the implementation of interventions following a two-pronged approach:
The main challenges of developing and delivering this pilot project so far have been the lack of existing literature on mental health and deafblindness, translating the checklist accurately into local languages to ensure its validation, and the stigma among parents and caregivers around mental health issues. Although parents were sensitised on mental health within the pilot project, some parents did not want to answer questions truthfully due to the lack of understanding of its importance and the stigma associated with mental health conditions. In addition, many parents who recognise the need for mental health supports for their children want a quick solution. The pilot project is still developing the referral pathways, but even once they are developed, the interventions will be dependent upon the existing mental health services available in India, which may not provide quick access to support. However, Sense International India will continue to work towards increased support to persons with deafblindness and their families on access to mental health services.
Going forward, SI India hopes to work with others in the deafblind community to validate the checklist, further integrate mental health considerations into its programmes and advocacy work and collaborate with civil society in India with a focus on mental health advocacy for policy-level changes.