Ravi Khawas from Bangalore spends over ₹40,000 monthly on therapies for his five-year-old daughter on the autism spectrum, including speech, occupational, and physiotherapy. Additionally, he spends ₹10,000 on medical tests and doctor consultations, totaling ₹50,000 a month. With no insurance coverage for these expenses, Ravi is unsure how to proceed, as he has only dealt with third-party insurance.
A year ago, he took out a family insurance policy with a private insurance company. When his daughter suffered from gut issues and sought Ayurvedic treatment, which cost over ₹1 lakh, the insurer rejected his claim, said that autism had not been disclosed prior to purchasing the policy.
“There is no concrete diagnosis until the age of five and autism is not a disease. It is a disorder. We were not asking for coverage regarding autism-related therapies, we were applying for treatment for her gut issue, which is separate. It is disheartening to see that the insurance companies still do not have a proper understanding of it and continue to deny us on such baseless claims,” he added.
Limited insurance options for autism care
M. Ravichandran, state general secretary of the Confederation of Associations for Persons with Mental Disabilities, said that there is a need to increase the ceiling for insurance coverage for individuals on the autism spectrum. ‘For my autistic son, I have a coverage of ₹1 lakh. The usefulness of this insurance is only evident when claims are settled. Despite all the promises about including insurance for children and adults with autism, the end result is largely disappointment for families,” he said.
Gaps in available government insurance schemes
Prem (name changed) availed the Niramaya scheme for his 33-year-old mildly autistic daughter nine years ago. The scheme, according to Prem, has largely been a boon but things took a turn for the worse in the last one year. “The claims take too long to get processed and there’s no one to raise these queries to. All we get are auto generated replies and I do not know where I stand anymore in getting reimbursed,” he said.
The Nirami scheme is a part of the National Trust, which was established under the National Trust Act, 1999, to promote the welfare of persons with autism, cerebral palsy, mental disorders, and multiple disabilities.
It offers up to ₹1 lakh in coverage for a wide range of medical services, including outpatient department (OPD) treatments, regular check-ups for non-ailing disabled individuals, preventive dentistry, non-surgical hospitalisation, surgeries to prevent disability aggravation, treatment for congenital disabilities, ongoing therapies, and alternative medicine.
It involves a premium of ₹250 per year for below poverty line individuals and ₹500 for those above the poverty line.
“Over 45-60% of the coverage is allotted for hospitalisation”, Prem said,” most individuals on the autism spectrum do not require hospitalisation. A significant portion of our money and time goes into therapies, medicines, and doctor consultations. For just three doctor visits, we pay over ₹10,000, which is more than 75% of the allotted ceiling. It would be better if the ceiling were removed and left to the parents’ discretion to use as needed.”
Delays and implementation hurdles
“Raja (name changed), parent of a 10-year-old child with severe autism, stated that with rising living costs, the coverage should be increased to ₹3 lakh. He also pointed out that the recent change in third-party agents under the Niramaya scheme has caused many claims to go unanswered.”
Raja (name changed), parent of a 10-year-old child with severe autism, said that with increasing living costs, it is necessary to raise the coverage to ₹3 lakh. He also pointed out that the recent change in third-party agents under the Niramaya scheme has caused many claims to go unanswered.
“In the past 10 months I do not know what the status of my claim is. When I call, I get an automated response and when they ask for the claim number I do not have an answer as the claim number was never generated. This past year due to the change, things have been turbulent,” said Ram (name changed).
Highlighting that the funding pattern is not transparent, Prem said that there is no idea how much is allotted for this scheme. “Atleast, if there was clear communication of when money is released for the scheme, we would know when we might get our claim reimbursed,” he said.
Ravi, however, only found out about the scheme a year ago. “We couldn’t apply for it as my daughter had to get an Aadhaar card and we were told she is too young for one,” he added.
In Tamil Nadu, Chief Minister’s Comprehensive Health Insurance Scheme ( CMCHIS) was extended to individuals on the autism spectrum in 2017. It covers multi-modal therapy including speech, occupational, behavioural and special education for autism spectrum disorder for up to ₹1 lakh per year per individual. While the scheme has been largely appreciated in the community, the hiccups in getting approval for empanelment and the tedious documentation for claims has left many special educators tired.
Call for better access, coverage and inclusion of autism care
Founder of National Charitable Trust Vasuki S. said she has been waiting for approval for her centre to be empanelled under the scheme. “I am the only centre in Salem district to apply to be under the scheme and I have been waiting for the past three years for the approval. Despite follow up with the differently-abled welfare department there has been no progress,” she said.
Development Education Centre Anbalaya in Chennai has now been empanelled with the scheme for the past seven years. “Due to the scheme a lot of children have benefitted and improvements too can be noted in them,” said Arokiamary, principal of the school.
However she also pointed out that the lack of guidelines in the scheme to make a claim for empanelled centres has left each third party agent bringing their own rules. “This time we are asked to document each session. Not only does this result in wastage of time but also the child is irritated. While documentation is necessary we have to attach over 30-50 photos of the monthly sessions to apply for the claim for each child. It gets very tedious,” she added.
Published – March 27, 2025 03:34 PM is
