Bengaluru: Parents of people with Down syndrome have urged policymakers to pay attention to self-reliance of their children.At an event marking World Down Syndrome Day organised by city-based NGO Enable India Monday, parents and experts stressed self-advocacy and financial independence.According to Down Syndrome Federation of India, the condition affects approximately one in every 800-1,000 live births in the country. Down syndrome, or Trisomy 21, is the most common chromosomal condition worldwide, which is caused by the presence of an extra copy of chromosome 21.“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,” said Kannan Hariharan, a parent.Kannan realised his daughter, Karishma, needed more attention, after which he shifted from Chennai to Bengaluru. Karishma, now 34, is an artist and has raised significant funds through her studio to support young adults with Down syndrome.Karishma, who currently lives in Devanahalli, is the recipient of World Downs Syndrome International Award-2014. Kannan pointed out several policy-based concerns for people like Karishma. “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.”Several other parents said initiatives like care homes or hostels are the need of the hour. Anitha Shankar said raising children with the condition can be challenging financially, as there is no govt 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 said.Anitha’s 18-year-old son, Sohursh Shankar, despite being a state champion for Karnataka in powerlifting, is struggling to compete internationally due to financial constraints. To represent his country, Sohursh needs to travel along with his mother and coach due to his condition, tripling the expenses, Anitha explained, adding: “There needs to be some policy support for this.”Shanti Raghavan, founder of Enable India, called for more inclusiveness in society for people with Down syndrome and openness towards accessibility.
