Money matters for special needs
Autistic children/adults require a combination of treatments and therapies, almost all their lives, and they are all expensive
Autistic children/adults require a combination of treatments and therapies, almost all their lives, and they are all expensive.Though there are insurance policies, CE finds that not many are aware of them. Plus, the process of availing benefits are a nightmare.
CHENNAI:Subhashini, mother of nine-year-old Kavin who has autism spectrum disorder (ASD), spends up to Rs 30,000 a month on various therapies including speech, vocational and early intervention, but what she spends for her entire family every month is just Rs 10,000. Such is the staggering expenses for therapies borne by families who have autistic children. As autism is a life-long condition that needs continuous therapy, parents struggle to meet mounting expenses. What happens when they cannot afford the multiple therapies anymore? What happens to the child/adult? Making the dilemma and emotional burden worse is the lack of insurance companies which don’t cover therapies (most don’t) under any scheme for children with ASD.
One session of speech therapy costs Rs 350-Rs 500 and sometimes more, depending on the therapists. As needs increase, other therapies including ABA (behavioural therapy), arts-based therapy, yoga therapy, swimming for sensory needs, oral motor therapy, augmentive alternative communication training to assist speech and develop communication (technology – app based) and play therapy, are added to the weekly ‘therapy routine’. “My son goes for three therapies a day. So, weekly we spend up to Rs 6,000. There are families that spend more than Rs 10,000 a week. So, the expense by the end of a month comes up to Rs 40,000(approximately),” says Krishnan. But, the availability of schemes that cover therapies is poor in the country.
Niramaya, a health insurance scheme introduced by National Trust for persons with autism, cerebral palsy, multiple disabilities and other diseases/disorders, covers overall medical expenses up to Rs 1 lakh within separate sub-limits and reimburses Rs 10,000 for therapies. But, parents ask, “Is that enough?”
The scheme covers expenses for corrective surgeries, non-surgical hospitalisation, OPD treatment and regular medical checkups. “The major expenditure is on their therapies and a reimbursement of Rs 10,000 is insufficient. But unfortunately, this is the only scheme that covers therapies. So, there is nothing tailor-made for our requirement,” rues Gopinath Ramakrishnan of Disability Right Alliance.
In 2016, Star Health and Allied Insurance launched a group insurance policy for children with ASD, becoming the only product in the private sector that caters to children with autism. It has so far covered over 200 children from the Chennai-based NGO Sankalp, providing an individual sum assured of Rs 1 lakh to each child. “The policy is on a group basis and covers regular in-patient hospitalisation and certain requirements specific to the problems of the target segment such as administration of special injections like botox are covered,” explains an employee, Star Health Insurance. The policy also acts as a routine mediclaim policy and covers medical and surgical therapies which require hospitalisation. “I don’t blame the companies… it’s a lifelong condition and therapies are needed for many years. But how do countries like USA do it? They pay a heavy premium and based on the child's requirements, it gets covered under insurance for certain number of hours of therapies. Also, every school offers therapy as part of the school programme that is free of cost,” shares Geetha, a parent.
Talking about tax deductions that can be availed after showing the disability certificate, Lakshmi, another parent, rues that getting a disability ID card is a cumbersome process. “Before getting the card, there is a huge process involved. Medical certificates have to be obtained, from the medical board, with certification by three doctors. This takes a lot of time and then it has to be submitted at the office of the differently-abled welfare officer.” The ID card is issued after a week or a month from the date of application. “But sometimes it gets delayed and also the tax benefits are less when compared to what we spend,” she adds.
While these are the only ‘benefits and schemes’ for people with ASD, many parents lack awareness on what already exists and say ‘We would love to know if there’s anything.’