Who will take care of my differently-abled child once I’m gone?
It’s never too late to start planning for your child’s future
One morning, 63-year-old Sadaf Shaikh* found her son Zeeshan* sitting at the dining table and grinning from ear to ear, barely able to contain his excitement. She was amused by his antics, but grew worried after a while; her son’s unusual cheeriness made alarm bells go off in her head. “He kept saying he’ll receive a lot of money in his bank account,” she recounts. After some prodding, he finally admitted to taking up a project with a company, in return for a hefty sum of money. The catch was that he’d only receive his payment after transferring ₹6,000 to a suspicious link. With a pang of horror, Shaikh realised that her son was being duped.
Thirty-five-year-old Zeeshan was diagnosed with cerebral palsy at birth and lives with poor mobility, speech problems, and muscle stiffness. “My son hasn’t been exposed to the real world, so he’s still very naive and vulnerable. I’m worried about how he’ll manage when my husband and I are no longer around because he can be taken for a ride so easily,” she admits. Shaikh’s concerns are not uncommon, with many parents of differently-abled children harbouring similar fears.
The United Nations concurs that “children with disabilities are at a dramatically heightened risk of violence, neglect, abuse and exploitation.” But, this is just the tip of the iceberg. The list of concerns that parents of differently-abled children grapple with is seemingly endless. Who will take my child to their doctor’s appointments once I die? Who will cajole them into gulping down ragi porridge for breakfast? How can I ensure that the money I’ve kept aside for them is used to care for their needs and not slyly pocketed by a cunning relative?
The emotional toll of securing your child’s future
Needless to say, raising a differently-abled child can be a daunting task in itself. When you’re not taking them to a physiotherapy appointment, you’re fending off offhand remarks from relatives who’re convinced that a disability can be “cured” by a thinly robed, glassy-eyed baba in the Himalayas. And if that isn’t enough, you’re perpetually plagued by the fear that your child will, someday, be alone on the battlefield.
According to Dr Alisha Lalljee, a Mumbai-based psychologist and special educator, planning the future of a differently-abled child can cause a tremendous sense of emotional turmoil in parents as well. “In fact, they might need counselling for it, too. Besides, as they age, they often suffer from their own health issues, so taking care of their bodies while simultaneously tending to their child can become challenging and crucial at the same time,” she explains.
As the popular adage goes, ‘You can’t pour out of an empty cup.’ In airplanes, too, the smiling flight-attendant often instructs, “If there is a change in cabin pressure…put your oxygen mask on first before helping others.” This is a felicitous metaphor for parenting, especially when your child has a disability. The bottom line is, you can only care for your child when you’ve cared for yourself. So, if you’re a parent of a child with a disability, it may be useful to visit a therapist and sift through years of anxiety, fear, frustration and burnout before you start planning for your kid’s future.
Once you’ve had a chance to emotionally and mentally prime yourself for the road that lies ahead, you have to contend with that big question: where do I start? To make the process a tiny bit easier, here is a guide that explores actionable steps—from financial planning to emotional care—that can provide peace of mind and a secure future for differently-abled children.
Planning for your differently-abled child’s future
Build a financial safety net
Set up a trust: According to Milind Chitnis, a Mumbai-based financial advisor, parents can secure their child’s finances by setting up a trust, where property, savings, mutual funds and stocks can be stowed away for the child’s benefit. Gopika Kapoor, a mother of a 20-year-old with autism, is of the same belief. “We’ve set up a trust for Vir and invested money in a fixed deposit. Eventually, the money will grow and he’ll be able to enjoy a comfortable life,” she explains.
“The most difficult question, however,” points out Chitnis, “is who should become the trustee?” Especially for couples with an only child, hunting down a reliable trustee can be a herculean task. “To solve this problem, you may choose to approach a trustee company instead,” he adds. A few companies that offer trusteeship services for a fee are Nextgen Estate Planning, Warmond Trustees, and Kotak Private. This means that a professional will be in charge of your trust, and you don’t have to entrust a scatter-brained masi with your child’s future. Remember that each of these trustee services cater to different needs and budgets, so ensure that you’ve done some research before picking one that’s right for you.
Explore government schemes: People with disabilities are entitled to a range of government benefits, including daycare facilities in Vikaas centres and health insurance up to ₹1,00,000 through the Niramaya Health Insurance Scheme. Remember that it’s compulsory for your child to have a Unique Disability ID in order to access any government schemes, so be sure to apply for one at the earliest.
Establish medical continuity
Choose a long-term healthcare provider: It’s also important to ensure that your child is receiving consistent and lifelong care from a healthcare provider who has an in-depth understanding of their condition. Lalljee explains that children with disabilities can sometimes develop new symptoms, like aggression, in adulthood. “So, parents need to get doctors on board who’re intricately familiar with the child’s case history and can treat them accordingly,” she explains. There’s also a possibility that your adult child may develop complications due to their condition, so doctors would benefit from keeping track of their symptoms over the years.
Plus, having a regular doctor for your child can work wonders for ensuring your sanity and peace of mind. Echoing this sentiment, Shaikh admits, “Our family physician has been treating Zeeshan since he was a child. He’s almost like a family member. So, even if we’re not around, I know he’ll be in safe hands.”
Secure socio-emotional wellbeing
Appoint a guardian: While your colonywali aunty may believe that children thrive once they’ve been shoved out of their comfort zone, Lalljee points out that children with disabilities only build resilience and feel supported “when there is routine, when they know what to expect, when they have a safe space.” So, be sure to choose a guardian who’s familiar, reliable, and suitable for a caregiving role.
If your child has a sibling, appointing them as a guardian is usually a safe bet. Mumbai-based Noori Fathima* has a 12-year-old daughter with delayed milestones. Fortunately, she has four other daughters who dote on their little sister. “They’re extremely protective of Huda* and defend her if I even try to scold her,” she laughs. Although, it’s also worth remembering that your child’s sibling may have their own dreams and aspirations, so it’s crucial to seek their consent before burdening them with a responsibility they may be reluctant to shoulder.
Look into assisted living options: What if your child doesn’t have a sibling they can turn to? What if your relatives have migrated to far-away countries in search of a better life? Don’t hesitate to explore assisted living facilities, like the government’s GHARAUNDA scheme, which has shelters in multiple states across India; Navkshitij, a non-profit organisation that offers residential care to adults with intellectual disabilities; and Cheshire Homes India, an institution that provides education and employment training along with residential care.
Encourage independence with vocational programs: If your child can manage daily tasks, decision-making, and personal care with minimal supervision, they may benefit from joining a vocational course that places emphasis on practical skills, so they can slowly—but surely—learn to stand on their own feet. Kapoor shared that her son, Vir, is enrolled in a program called Skill Shakti Community in Mumbai, where young adults with disabilities are taught crucial life skills. Skill Shakti is just one among many. Special Child Assistance Network in Tamil Nadu, Sarthak Educational Trust in Haryana, and Latika in Uttarakhand are a few others.
If you’re grappling with guilt or anxiety about not having a meticulous plan in place, this is a gentle reminder that it’s never too late to begin. Even a small step—like creating a trust or identifying a reliable doctor—can make an enormous difference in the grand scheme of things. But, most importantly, remember to prioritise your own emotional care and well-being, so you can show up for your child with patience and compassion and make the best decisions for their future.
*Names changed upon request
