For Mugdha Kalra, a parent of a special needs adult, financial planning has consumed the past few years. The question for her is, who will take care of her son when she is no longer there? She is planning to set up a trust fund that will help him reside at a support home. Ms. Kalra is not alone: for parents of children of special needs, the question of ‘who after me?’ is constantly at the back of their minds, a question made difficult by the fact that there is very little in the way of State-funded support services in the country.
“Even the basic facilities cost ₹50,000/month. A parent must make a lifetime plan for their child to be able to have this support once they are old or too incapacitated to take care of their child. Many people with autism also have comorbidities or other health conditions and money is needed for this too. Parents need to start planning early and set up trust funds for the child,” says Ms. Kalra, who is also an autism advocate.
Understanding autism
Autism is a diverse group of conditions related to development of the brain. The World Health Organization estimates that as of 2021, 1 in 127 people globally had autism. Exact numbers for India are hard to come by, but up to 1.8-2 million children in India are thought to have ASD, as per figures cited in a paper published in Cureus in 2024.
Not everyone who is on the autism spectrum has the same level of needs or abilities. Some people with autism may face several difficulties in their day-to-day lives, while others may only need help with specific tasks. Those with higher needs may require assistance from a caregiver to function and live a life of dignity. In India, as in many other countries, caregiving responsibilities fall on the parents, and predominantly on mothers. But this then raises the question of long-term planning: how to ensure their child is provided for, and care for, after they are gone or unable to care for them anymore.
“My son will outlive me; a facility for neurodivergent individuals is the only option,” says Sutapa Bose, senior special educator, India Autism Center (IAC), a non-profit organisation based in Kolkata. Her son has just turned 19 and she is planning to set up a trust fund for him soon to help in his future care and living. “Financial stress is always there; care has become expensive. But his health and safety are also major concerns for us,” she adds.
Guilt, sibling and caregiver burnout
Caregiving is no easy task. It take a toll, both physically and mentally. “There is always guilt about not doing enough for our children even though our personal lives are affected,” says Ms. Bose, adding that their parents’ mental health inevitably suffered, an aspect of caregiving that is not much attention is paid to.
An unfair amount of the burden of caring for a person with autism also falls on the sibling, if there is one, who is younger and more able than the parent, so an unsaid expectation lies on them to offer lifetime care, Ms Kalra added.
This is what happened in the case of the Chatterjees. Jharna Chatterjee’s son lived and grew up during a time when she was the only breadwinner in the family and also took on caregiving responsibilities. Her son, Sanjib Chatterjee, passed away 16 years ago due to comorbidities. She did not have the financial resources to send him to a care facility.
“It hurts my soul to think that my son passed away, but in a way, as a mother I can die in peace knowing that my son led a dignified life and was cared for. How would I ensure that if he lived after I passed away? My elder son had spent half his life caring for my younger son, who was autistic. It drained our finances, we lost our house, and my elder son lost his business while taking care of his brother. Life felt unfair, but we had no choice,” said Ms. Chatterjee, who is now 87.
Little support
Parents, caregivers and experts point out that what makes their caregiving harder, is the lack of support from both the government and the society in caring for people with autism.
Ms. Kalra notes that even when support homes are available, the basic facilities are sometimes below average and may not always offer a dignified life.
“Once we are not there, we hope to ensure our children are in a place where they have a dignified and structured life and are cared for. However, the government does not do much: India has individuals and NGOs trying to make small changes. That is not enough. We need to have structural and policy-based change in the country to make the society more inclusive for people on the spectrum,” points out the parent of twin boys with autism.
The IAC, in this regard, recently brought out a white paper to seek GST exemption for disability support services. The institute argued that taxing therapy and rehabilitation increases the financial burden on families and sought a service-based approach instead of disability severity thresholds. Representatives of IAC also met with the Union Finance Minister Nirmala Sitharaman and presented the paper to her and put forth their demands. According to Sakhi Singhi, a governing board member of IAC, the Finance Minister acknowledged the issue and assured them that they would look into the matter.
The image has been changed as the earlier one used, was inappropriate. The error is regretted.