For Delhi-based Madhusudan Srinivas, 57, making it home early from work every day is a priority. He wants to ensure his son Abhimanyu, 25, who is on the autism spectrum, gets all the time and care that he needs. “Spending quality time with my child is my priority and with the support of my colleagues, I am able to manage early shifts,” said Srinivas. Abhimanyu has all the love and help he needs, but his care doesn’t come cheap.

Like the parents of many special needs children, Srinivas and his wife Shubhra Gupta, both media professionals, have struggled to balance paying for their son’s immediate needs and planning for his future. “Financial planning by a special needs child family is planning for two generations. Parents have to plan for lifetime care of the child within their lifetime and after them,” said Jitendra P.S. Solanki, author of ‘Financial planning for the families having children with special needs’ and a Sebi-registered investment advisor.

Parents have to consider how the child will be provided for after their death and who will manage the affairs without any self-interest-

If you are a parent or guardian to a child with special needs, here are a few things you need to take into account when planning for your child’s future. 

Sea of concerns 

On 3 December, India celebrated International Day of Persons with Disabilities, but for the millions of people with disabilities in India it means little. While Census 2011 put the number of people with disabilities in India at around 26.8 million, other estimates say the figure is much higher; for instance, the National Centre for Promotion of Employment for Disabled People pegs it at 70 million. Government aid and social infrastructure is all but absent in the country. For instance, the reimbursement provided by the government for the tuition fees for children with disabilities ranges from a paltry ₹20 to ₹50 per month, which may not even pay for admission to most schools, let alone a school that caters to children with special needs. 

It is natural for parents, therefore, to worry about who will care for their child after they are gone. “A special needs child may not be in a situation to take his own decision even after attaining majority. Parents have to consider how the child will be provided for and maintain the standard of living after their death and who will manage the affairs without any self-interest,” said Solanki.

It becomes crucial because most of these children don't even understand money matters. “It depends on the degree of challenge of the child. Autism is a spectrum disorder, and even those who are high functioning and integrated into the school system may not be able to make financial decisions,” said Srinivas. 

The other important question to ask is how much help and care your child will require in the long term. “If your child has the potential and agency to eventually make financial decisions for himself, you might not have to worry about having a guardian handle their finances. But the bulk of children with mental disabilities will need to be cared for life,” said Srinivas. 

If lifetime care is what your child needs, you will have to provision for hiring caregivers or placing them in a care facility after you are gone. Therapies and hiring caregivers can be quite expensive. 

“When my son went for speech therapy sessions, they would charge ₹750 for each 45-minute session. How many sessions can you afford?” asked Indu Singh, 40,  who is a financial advisor and parent to a child with special needs. But two major future goals have to be factored in when you spend or save. “I tell my clients that their retirement comes before the higher education of their child. But in the case of a child with special needs, both retirement and the child’s future are equally critical. If the corpus falls short, the parents need to be open to working longer, finding a parallel source of income or cutting corners to save more,” said Deepali Sen, a certified financial planner and founder of Srujan Financial Advisors.

If the corpus falls short, the parents need to be open to working longer, finding a parallel source of income or cutting corners to save more-

Another challenge is creating a safety net, since many insurers are reluctant to provide coverage for people with disabilities. “It’s extremely important to have health insurance cover, because kids with disabilities are often more prone to injuries and hospitalisation,” said Singh. “Insurers are reluctant to cover those with disabilities because it is something they don’t understand very well and, therefore, can’t assess the risks associated with it,” said Abhishek Bondia, principal officer and managing director, SecureNow.in.

Finding a way

While every parent wants to give their child the best of everything, parents of a child with special needs might have to make some hard choices.

“Prioritise what is best for the kid within the limits of the income you have,” said Sandeep Sharan, 50, director of Asia Pacific and Japan, Dell, who is parent to a child with special needs. “The key thing is to plan a future for your child, ensuring all the comforts that he enjoys now, in a sustainable way,” he said.  

It is crucial to create a support system of trusted family and friends to help with the care of your special needs child, especially in your absence. A number of Srinivas’s family members are willing to fill in as guardians, depending on ability and availability, whenever it's required.

Having caregivers is one aspect, the other major concern is building enough corpus to sustain the care of the child through his lifetime. “We had a trust formed of family and friends, into which members of the family contributed and built up a corpus, which can be banked and invested for his future,” said Srinivas. 

Sharan, who does his own financial planning, recommends investing aggressively. “You have to decide at what stage you want to take up risky investments like equity and when you will switch to fixed income,” he said. He also suggests buying property that could yield a rental income to keep income flows steady even after retirement.

In all this, inflation poses the biggest threat to a long-term savings plan and can devalue your corpus significantly if you don’t plan right. One way to counter it is to start early. “Parents should start planning as soon as the disability is identified. Through proper budgeting, they should monitor the child's expenses so that they are aware about the financial requirement,” said Solanki.

Singh seconds this. She has calculated how much her child might need for monthly expenses in the future and adjusts the amount for inflation every few years. The final corpus will be available for her child’s expenses, which can be drawn upon through a systematic withdrawal plan.

As for health insurance, according to Bondia, while the industry is opening up to the idea of insuring people with disabilities, there is still a long way to go. But there are a couple of ways around this.

“If parents have the choice to opt for group insurance through their employer, they should go for it and enhance the coverage through top-up insurance. This would cover the child as well. They can also buy a personal accident cover which would take care of medical expenses for the child in case of accidents and injuries,” he said. 

Taking life insurance for parents is critical. Since most children with special needs are partially or completely financially reliant on their parents, the sudden passing of a parent might spell disaster for the child if there isn’t enough saved up already. An insurance payout can boost the corpus for the child’s care in such a scenario.

It’s not an easy road for parents of children with disabilities. There are many considerations to be taken into account and a lot of planning and safeguards to be put in place to secure their future. But, perhaps, the most crucial part is to ensure your child lives a fulfilling life. Abhimanyu, who has inherited a love of music from his parents, is safe and happy, and for now that’s enough for Srinivas.