Rabbi Kawas, from Bangalore, spends over £40,000 a month on the treatment of her 5-year-old daughter on the autism spectrum, including speech, occupation and physical therapy. Additionally, he spends £10,000 on medical tests and doctor consultations, totaling £50,000 a month. There is no insurance coverage for these costs, so the rabbis only deals with third-party insurance, so we are not sure how it will proceed.
A year ago he took out a private insurance company and family insurance. When his daughter suffered from intestinal problems and sought treatment for Ayurveda, which costs more than a pound, the insurance company rejected his claim, saying that autism had not been disclosed before purchasing the policy.
“There’s no specific diagnosis until autism isn’t a disease at age 5. That’s a disability. I didn’t seek compensation for autism-related treatments. I was applying for treatment for her intestinal problems.
Limited insurance options for autism care
M. Ravichandran, state general secretary of the Association Federation for Mental Illness, said the upper limit for personal insurance coverage on the autism spectrum should be increased. “For my autistic son, I have £1 coverage. The usefulness of this insurance is only obvious if the claim is resolved. Despite all the promises about including insurance for children and adults with autism, the end result is almost a disappointment for the family,” he said.
The gaps in government insurance systems available
Prem (name changed) utilized the Niramaya scheme for her 33-year-old mildly autistic daughter nine years ago. According to Prem, the scheme has been a boon for the majority, but things have gotten worse over the past year. “The bill takes too long to process and no one will raise these queries. With just the auto-generated replies, I don’t know where I’m standing now that it’s a refund,” he said.
The Niramaya scheme is part of a national trust established under the National Trust Act of 1999 to promote the welfare of people with autism, cerebral palsy, mental disorders, and multiple disorders.
It offers coverage of up to 1 pounds for a wide range of medical services, including outpatient department (OPD) treatment, regular examinations of non-return disabilities, preventive dentistry, non-surgical hospitalizations, surgery to prevent worsening of the disorder, treatment of congenital disorders, ongoing treatment, and alternative medicine.
This includes a premium of £250 a year for individuals below the poverty line and £500 a year 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), a parent of a 10-year-old with severe autism, said that the coverage should be increased to 3 raks due to rising costs of living. He also pointed out that recent changes in third-party agents under the Niramaya scheme have not been caused by many claims.”
Raja (name changed) a parent of a 10-year-old child with severe autism said that due to increased cost of living, coverage needs to be increased to £3. He also pointed out that recent changes in third-party agents under the Niramaya scheme have unanswered many claims.
“For the past 10 months, I don’t know what the status of my claim is. When I call, I receive an automated response and when I ask for the claim number, I don’t have an answer because the claim number was not generated.
Emphasizing that the funding pattern is not transparent, Prem said he doesn’t know how much he is allocated to the scheme. “At least, if there was clear communication about when the money would be released due to the scheme, we would know when our claims could be refunded,” he said.
However, the rabbi only knew about the scheme a year ago. “We couldn’t apply for it because my daughter had to get an Aadhaar card. She was told she was too young,” he added.
In Tamil Nadu, the Prime Minister’s Comprehensive Health Insurance Scheme (CMCHIS) was extended in 2017 to individuals on the autism spectrum. Although this scheme is largely highly regarded by the community, the boring documentation of hiccups and claims to gain approval from the Enpanement has exhausted many special educators.
Seeking better access, coverage and inclusion in autism care
The founder of the National Charitable Trust Vasuki S. said she is waiting for approval for her centre to be enpaneled under the scheme. “I am the only centre in the Salem district and have applied to be under the scheme and have been waiting for approval for the past three years.
When the scheme was introduced, about 45 special schools were enpaneled, according to sources from the welfare department of the welfare department with different capabilities. “The department has proposed to more clinics to more clinics to provide treatment for five disorders, including non-autism intellectual disability and muscle dystrophy. We have proposed an insurance model for insurance to provide these treatments,” they added.
According to the department, it aims to benefit more than 9,000 children with intellectual disabilities. The government’s order for this effect was issued in 2022, sources added.
Chennai’s Development Education Centre Ambalaya has been enpaneled in this scheme for the past seven years. “Many children benefit and there is a possibility that improvements will be seen in them,” said school principal Arroki Mary.
However, she also pointed out that the lack of guidelines in the scheme to assert Empaneled Centers left each third-party agent bringing its own rules. “This time you will be asked to document each session, which will not only lead to wasted time, but will stimulate the child. Documentation is required, but you will need to apply for a claim for each child, with at least 30-50 photos of the monthly sessions attached.
Published – March 27, 2025 03:34 PM IST
