The unsung heroes: Health insurance denied for autistic son, mother sheds light on systemic issue

Geetha VM's son Om, was 10 when he was diagnosed with pneumonia in February 2020. To avail medical treatment, the Bengaluru boy was hospitalised and his family was promised insurance coverage by Care Health (formerly Religare) Insurance company.

However, later they were denied health cover on account of Om's autistic condition, which the parents were not aware and hence did not reveal at the time of purchasing the policy. Shortly after Om was admitted, a representative from the insurance company arrived at the hospital, demanding Geetha sign a declaration that Om has Autism Spectrum Disorder (ASD) and specify the age at which he was diagnosed.

In an interaction with Midday, Geetha tells us: "When we bought the insurance policy, Om had developmental delay, and autism wasn't diagnosed by the government doctors. The health experts claimed that he only had developmental delays with academic and learning difficulties. Moreover, when you buy insurance, the agents usually check for underlying conditions like thyroid, cancer, and those kinds of pre-existing illnesses."

She continues, "In our case, they never highlighted or checked with us whether Om had intellectual disabilities or any such condition within the family. So, we took it for granted and didn't read all the rules." What followed was an email from the insurance company stating that Om's policy 'was subject to cancellation due to non-disclosure of material facts regarding pre-existing ailments.'

Upon learning this, Geetha and her husband were taken aback. They didn't expect that the medical cover for pneumonia would be declined owing to his underlying developmental delay/autistic condition which was not revealed. After several emails pointing out that Om's ASD had no bearing on his physical illness, the family was met with disappointment. They had to pay all the treatment bills with the help of Om's husband's company corporate insurance.

While Geetha believes it's her fault for not disclosing that Om is under ASD, the question remains - why are insurance companies denying health coverage for people with intellectual and developmental disabilities?

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What does the law state?
Autism and Down's Syndrome fall under the category of intellectual disabilities as per the Rights of Persons with Disabilities Act, 2016. This Act obligates the central and state governments to design schemes ensuring inclusive insurance coverage for persons with disabilities.

The Niramaya Health Insurance Scheme, under the National Trust Act, 1999, stands as the only government program offering comprehensive health cover for individuals with intellectual disabilities. This scheme grants an annual reimbursement-only insurance cover of up to Rs 1 lakh, which includes hospitalisation, outpatient department fees, ongoing therapies and transportation costs for those with valid disability certificates.

However, as per Geetha, insurance companies breach these regulations by refusing coverage or denying claims of individuals living with these conditions. "I did my research and spoke to senior parents of autistic children. They told me that companies don't provide cover when you mention autism. You have to be secretive and discreet to avail health insurance for children diagnosed with autism," shares Geetha.

Her anger is in place. When the Insurance Regulatory and Development Authority of India (IRDAI) has clearly stated that intellectual disabilities, including autism, down's syndrome and other intellectual disabilities or neurodivergence should be mandatorily covered, why are insurance companies denying the claim?
"There may not be enough data or clinical experience of long-term risks to design the product appropriately," wrote a senior manager of Care Health Insurance to Geetha. The manager insisted that despite IRDAI mandating health cover, we don't have to give you a policy necessarily.

He added, "If we provide a policy but then prevent you from making claims, you could file a lawsuit against us. However, we haven't issued a policy to you, and we're unable to do so." Though Geetha had, later, provided them with his disability certificate which indicated he has a mild to moderate Autism Spectrum Disorder.

Geetha tried her level best to convince the manager. She also suggested that a panel of doctors can speak to the underwriting team stating that autism is not an illness or a disease, but it's more like a a lifelong neurological condition and doesn't impact the physical condition of a person. To her apathy, the insurance company denied all her requests.

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If Covid-19 can be covered, why not autism?
Currently, Geetha is on a mission to expose the inefficiencies of the system. "I've been reaching out to numerous insurance companies, and I've even asked many parents to do the same for research purposes, almost like cold calling. Initially, these companies promise attractive premiums, covering amounts like 1 crore or 50 lakh for the entire family. They send us detailed emails with all the information. However, as soon as we disclose that only our son has Autism Spectrum Disorder, things take a different turn."

"The representatives handling our inquiries often lack sufficient knowledge. They quickly classify it as an "Intellectual Disability" and state that it cannot be covered. When we press them for more information, they struggle to provide satisfactory answers due to their limited understanding. Even when we escalate the issue to their managers, we're met with a similar response. They claim that their underwriters are still researching and trying to figure things out."

When the unheard viral illness, Covid-19 made an outbreak, insurance companies saw it as a lucrative opportunity to devise timely products. Despite the ambiguity and rapidly evolving situation, insurance agents promptly decided to include Covid-19 coverage overnight without knowing if Covid-related expenses would amount to 1 lakh, 2 lakh, or even 6 lakh.

Geetha's frustration stems from this swift action to cover Covid-19, an unfamiliar and terrifying phenomenon. While today Covid-19 is well understood and accepted as a part of our lives, back then, it was an unprecedented threat affecting the entire globe. Nevertheless, insurance companies readily embraced the need to cover it, recognising its importance for the well-being of the entire population.

No space for disability
Here is a minority group, persistently seeking answers for years, yet receiving no response. Is it because of prejudice towards individuals with disabilities or an indifferent mindset? Disabled children don't have the power to vote - does their absence from the voting demographic render their needs insignificant? However, Geetha hesitates to solely blame politicians, as the government, through the IRDAI, has unequivocally directed insurance companies to provide coverage.
Although there are a few insurance companies, like Star Health Insurance, that offer coverage, the amount they provide is paltry - just Rs 3 lakh. This amount proves insufficient, especially when considering medical expenses for conditions like pneumonia, which necessitates hospitalisation for a mere 48 hours.
Even for such a short duration, the medical bill can range from Rs 40,000 to Rs 60,000, considering inflated medical costs and other expenses. This inadequacy is glaringly evident and leaves much to be desired in terms of support for individuals with disabilities.

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Furthermore, their coverage only extends up to 25 years of age. When Geetha inquired with her health insurance provider about extending coverage for her son, she learnt that they will not cover up beyond the age of 25. However, Care Health Insurance reached out to her with an alternative policy.

"At that time, my son was only 12 years old, and I expressed concerns about what would happen if he encountered health issues before reaching 18, even common ailments. To this, they reiterated that coverage would only commence after he turns 18, and even then, it would be limited to Rs 5 lakh. Additionally, they required me to pay a significantly higher premium, almost double the standard rate, for this extended coverage," Geetha tells Midday.

Similarly, there are a few insurance companies - just a handful - that offer very low coverage. Some individuals are forced to pay high premiums for this limited coverage, which is completely unjust. Geetha opines that it's simply not right to exclude a significant portion of the population like this.

Take the case of pneumonia, for instance. Anyone can fall ill with pneumonia; it's not something that discriminates based on age or any other factor. What frustrates Geetha even more is that there are insurance covers for things like pet animals, houses and cars, but why not for human beings? Why are insurance companies denying coverage to a significant portion of the population? This discrepancy is concerning and highlights the need for greater inclusivity in insurance coverage.

What's next for Om?
People with Autism Spectrum Disorder are normal individuals and citizens of India, deserving of equal rights and access to essential services like health insurance. As a parent and advocate, Geetha is raising her voice to demand inclusivity and justice for our children.

Geetha's resilience knows no bounds. She has taken to social media to raise awareness on the institutional inefficiencies when it comes to health cover for children with special needs. "It has to go to the insurance companies, the IRDA, to the right people for it to click. And it's just been 2-3 days since I started this whole thing, maximum 48 hours."

For Geetha, the goal isn't about going viral and amassing 1000+ views. Even if it's just three views, the content must reach the right target audience, namely the decision-makers within insurance companies. It sheds light on the burning negligence when it comes to covering children with developmental conditions and serves as a stark reminder for the IRDAI to question insurance companies about their failure to adhere to the regulations.

To conclude, Geetha adds, "I am appealing to insurance companies and the public alike: my son, along with countless others on the autism spectrum, deserves proper health insurance coverage. We are willing to pay premiums for fair coverage that reflects their needs and ensures their well-being."