Bengaluru Parents Advocate for Self-Reliance of Children with Down Syndrome
In Bengaluru, parents of individuals with Down syndrome have made a heartfelt appeal to policymakers, urging them to prioritize the self-reliance and independence of their children. This call to action came during an event organized by the city-based NGO Enable India to mark World Down Syndrome Day on Monday. The gathering emphasized the critical importance of self-advocacy and financial independence for people with this chromosomal condition.
Understanding Down Syndrome in India
According to the Down Syndrome Federation of India, this condition affects approximately one in every 800 to 1,000 live births across the country. Down syndrome, also known as Trisomy 21, is recognized as the most common chromosomal condition worldwide. It is caused by the presence of an extra copy of chromosome 21, which can lead to developmental delays and intellectual disabilities.
Kannan Hariharan, a parent who shared his personal journey, explained, "We as parents want to make them self-reliant and independent so they can focus on what they love to do. In my case, we did not know that my daughter had Down syndrome until four months after her birth. It took some time to contemplate because in many situations parents face difficulties to adapt to it."
Personal Stories of Resilience and Advocacy
Kannan realized his daughter, Karishma, required additional attention, prompting him to relocate from Chennai to Bengaluru. Today, Karishma, aged 34, has flourished as an artist. She operates her own studio and has successfully raised significant funds to support young adults with Down syndrome. A resident of Devanahalli, Karishma is also the recipient of the prestigious World Down Syndrome International Award from 2014.
However, Kannan highlighted several pressing policy-based concerns. "Most companies do not provide health insurance for them. Imagine if a family of four is involved in a road accident, the person with Down syndrome will be excluded from it for no valid reason," he pointed out, underscoring the systemic barriers faced by individuals with this condition.
Challenges in Education and Financial Support
Other parents echoed similar sentiments, stressing that initiatives such as care homes or hostels are urgently needed. Anitha Shankar shared that raising children with Down syndrome can be financially challenging due to a lack of government policy support. "Most of the regular schools do not admit children with Down syndrome; they either say the child isn't ready or the school is not ready," she lamented.
Anitha's 18-year-old son, Sohursh Shankar, exemplifies both talent and struggle. Despite being a state champion for Karnataka in powerlifting, Sohursh faces obstacles in competing internationally because of financial constraints. To represent his country, he must travel with his mother and coach due to his condition, which triples the expenses. Anitha emphasized, "There needs to be some policy support for this," calling for targeted assistance to enable such athletes to shine on global stages.
A Call for Inclusiveness and Accessibility
Shanti Raghavan, the founder of Enable India, advocated for greater societal inclusiveness and openness towards accessibility for people with Down syndrome. Her message reinforced the need for a collective effort to break down barriers and create opportunities for self-reliance.
The event in Bengaluru served as a powerful reminder of the ongoing struggles and aspirations of families affected by Down syndrome. By amplifying these voices, parents and experts hope to drive meaningful policy changes that foster independence, financial security, and a more inclusive society for all.
