When You Need A Plan With A Difference: Financial Planning For Neurodivergent Children

Udita Mitra, 41, software engineer, and her husband Ankon Mitra, 43, architect artist, who are based in Delhi, realised their son was on the autistic spectrum only after he turned four years old. His speech was delayed, but the couple got worried when he wasn’t able to speak properly even after turning three.

Initially, they consulted speech therapists, and enrolled him for activities, such as yoga, swimming, music and art, on the suggestions of family and friends. They even went for homeopathic and Ayurvedic practices, alongside superfoods to stimulate their son’s brain development, some of which they are still continuing.

Udita remembers her son’s struggles when he started school at four. “He was a very introvert child. Even when other children spoke to him, he didn’t respond. For a long period of time, he didn’t have any friends.”

But when the schoolteacher raised concerns about the child during a parent-teacher meeting, the Mitras realised it could be something more. The school had a tie-up with an institution that assessed children with developmental issues, and got him assessed there. It was then that they found that the reason for their son’s developmental delay was because he was on the autistic spectrum.

Even after the diagnosis, they felt a bit lost. “It was new to us and we were not aware about it,” she says. What helped was reading about the condition and how to handle it.

In due course, they accepted the situation and took therapies and medication. Their son, now 13, has limited vocabulary, but he is able to communicate with friends, teachers and family with the support of a special education teacher (who has been teaching him since nursery), online special education tutors, and his mother. He is now in Class 8. However, higher classes will require subject-specific special educators, which the school doesn’t have. So, the school has advised them to consider open schooling for higher classes.

Incidences of neurodivergence among children is pretty high in India. According to a 2018 study, titled Neurodevelopmental Disorders In Children Aged 2-9 Years: Population-Based Burden Estimates Across Five Regions In India, in 2018, by PLOS Medicine, a peer-reviewed weekly medical journal, almost one in eight children in that age group has at least one of the nine neurodevelopmental disorders (NDDs). These include speech and language disorders, autism spectrum disorders, attention deficit hyperactivity disorder, learning disorders, and epilepsy, among others.

The study reveals that NDDs compromise the development and achievement of full social and economic potential at the individual, family, and community level.

Dr Sunil Kumar Baranwal, head of department, neurosurgery, Manipal Hospital, Gurugram, says, “Early intervention can improve outcomes, but the financial burden of supporting neurodivergent children remains a major concern for Indian families.”

High Costs...

Mitras’ lives now revolve around a plan, with their son’s needs at the centre. It includes managing the son’s financial needs, which are much higher than what other parents typically spend on their children. Udita gives an idea. “If I consider all the classes and sessions he attends, besides the medication, the cost crosses Rs 90,000 per month,” she says.

But, the charges may vary depending on the city, location, therapy, and the duration of the treatment.

According to Lavina Nanda, head of developmental services, Children First, a Delhi-based child and adolescent mental health organisation, an initial consultation with a developmental psychologist or a developmental paediatrician costs Rs 1,000-5,000, depending on the facility. A single session of speech, occupational, or social communication therapy costs between Rs 800 and Rs 3,000.

Says Baranwal: “An initial consultation with a developmental paediatrician or psychiatrist may cost Rs 500-2,500. Occupational, speech, and behavioural therapies can cost Rs 500-2,000 per session, which comes to Rs 10,000-40,000 or more per month, excluding special education and medication.”

Then there are ongoing expenses of special tutors, guides, skill building activities, 24-hour care and household support and so on, depending on the needs and family structure.

Says Nanda: “Therapy is the largest ongoing expense. Children who need neurodevelopmental support rarely go for just one session a week. A three-year-old in an early intervention programme, may need 2-3 sessions a week, which can cost Rs 20,000-50,000 a month depending on the therapies.”

…Cause Financial Strain

The high costs cause financial strain for many families, necessitating tough decisions. After a few years’ break from her job to take care of her son, Udita rejoined the workforce to support her family’s growing needs and long-term financial stability. Her family looked after the son when she went to work, but parents who do not have a support system also need to budget for help and caregivers at home.

Says Nanda: “Financial strain is a real concern for families, especially in India, where insurance and other support are sparse. Caregivers often plan their lives around a child’s therapy, reducing their working hours or changing shifts. Changing jobs is quite common. Families prioritise their child’s therapy and move workplaces, or even cities, to be closer to the support their child needs. Some travel long distances for therapy. When a family cannot keep up this level of therapeutic commitment alongside school fees, healthcare and other household responsibilities, continuing becomes very difficult.”

How To Minimise The Cost

Check Health Insurance: While health insurance is available, it is usually costly for persons with an NDD. Plus, it may have limitations.

Says Rohan Goel, business head - health insurance, Policybazaar, an online insurance aggregator: “Some plans with OPD riders cover psychiatrist and psychologist visits, either in person or online. Some also offer e-counselling for speech, parenting and anxiety concerns.”

But the list of exclusions is long, according to Goel.

• Some general OPD covers exclude psychiatric consultations.

• Therapies, including speech, behavioural, occupational, special education are not covered as they fall under the ‘Excl05’ category of exclusion or are treated as non-medical cases.

• OPD physiotherapy only covers physical conditions.

• Caregiving and attendant support is also not covered. Help with daily activities such as bathing, dressing and feeding is excluded under Excl05.

• Concierge features only help you book a nurse or attendant; and you pay for the care.

• Coverage is limited to medically necessary hospitalisation. If a person with an NDD is admitted for 24+ hours for an acute illness, injury or complication, standard policies cover it like any other admission. While mental illness is covered under the Mental Healthcare Act, 2017, many policies exclude “mental retardation / subnormal intelligence / arrested development of mind” sometimes as a permanent exclusion. Besides, hospitalisation only for psychometric testing, assessment or observation, with no active treatment, are excluded under Excl04 exclusions and rehabilitations and special training under Excl05 exclusions.

Also, a child with a disability or special healthcare needs is not automatically covered simply because the parents have a family floater cover. Says Goel: “The child has to be disclosed as an insured member when the policy is purchased or added subsequently. Depending on the policy and the child’s medical history, coverage may be offered on standard or modified terms, including applicable waiting periods, exclusions, or extra premium.”

However, a higher premium for covering a special child should not be considered a blanket rule, because the premiums are determined based on age and other relevant risk factors.

Check Social Security: The law helps in certain cases. Says Sermon Rawat, advocate, Supreme Court: “There are laws that guarantee the right to free education for children with special needs and even reservation in both higher education (5 per cent) as well as employment in the government sector (4 per cent); but most of such rights are confined to children with benchmark disabilities.”

Benchmark disabilities are considered when the child has at least 40 per cent of a specified disability.

Rawat adds that provisions under the Rights of Persons with Disabilities Act, 2016, ensure non-discrimination in matters related to admission, accessibility, and individualised support for children with disabilities in all recognised government and non-government educational institutions. However, other rights under this Act are specifically available only to children with benchmark disabilities.

Also, the National Trust under the National Trust Act, 1999, for persons with disabilities, protects the rights of specified disability categories, including autism, cerebral palsy, mental retardation, and multiple disabilities. The Trust is tasked with offering services, including early intervention and health insurance, caregiving services, residential care, and legal guardianship.

Some of its schemes are: Disha (early intervention and school readiness), Vikaas (day care), Niramaya (Rs 1 lakh health insurance including OPD), Samarth (respite care), and Gharaunda (group home for adults). Says Goel: “Niramaya covers areas including hospitalisation, OPD, medicines and diagnostics, ongoing therapies, corrective surgeries, alternative medicine and transportation. But the Rs 1 lakh cover is subject to section-wise sub-limits; for instance, the current benefit structure provides an overall limit of Rs 55,000 for hospitalisation, Rs 19,000 for OPD, Rs 20,000 for ongoing therapies, Rs 4,000 for AYUSH and Rs 2,000 for transportation.”

Rawat adds, “Benefits of these schemes are not dependent on any certain socio-economic group, and they continue into adulthood as well.”

What Should You Do?

To afford all the expenses, including education, health, medicine, nutrition and others, you need to plan properly.

Says Anuj Kesarwani, certified financial planner (CFP), chartered trust and estate planner, and founder of Zenith Finserve: “Parents should prioritise their own financial independence alongside their child’s future security. Unless they are financially well-off, they may need to save a substantial proportion of their income and manage discretionary spending.” He suggests they should start with building an emergency reserve and taking health and life insurance protection simultaneously.

Parents should also remember that until their finances are stable and growing, care can’t be sustained. Says Kesarwani, “As the child may remain financially dependent throughout their life, parents may need to effectively fund one-and-a-half or even two retirements. There is no general corpus or savings percentage that can work for every family as the required amount depends on the parents’ current age, lifestyle, existing assets, income, etc.”

They should begin by estimating their retirement expenses and the cost of the child’s future living, medical, therapy, and support. They must also account for the possibility of increased care requirements and the cost of arranging alternative care if they are no longer able to provide it themselves.

In these cases, the parents or caregivers also need to think beyond their lives. It is important to create a Will carefully. “Instead of transferring assets directly to a child who may be unable to manage money independently, the assets can be managed by appointed trustees for the child’s benefit,” says Kesarwani.

Udita and her husband have been steering their way to create and maintain this delicate balance for over a decade now. They have been successful too, to an extent, by uninterruptedly providing their son with the required therapies, skill-building activities, mainstream schooling, nutritious food, and medications, along with having a health insurance family floater policy, and investing in Employees’ Provident Fund (EPF) and mutual funds through systematic investment plans (SIPs).

To their relief, their son has developed a keen interest in ceramics and art, and is set to hold his first solo exhibition in Delhi around Diwali, under his father’s guidance.

versha@outlookindia.com