Every parent reading this blog knows the question. Gayatri has written about it here — the one that arrives uninvited at 2 a.m., while you are cleaning a sofa or washing sheets or simply watching your child sleep.
After us, then what?
For years, I treated that question the way you treat a toothache you are afraid to have examined. I let it throb. I changed the subject in my own head. I told myself I would deal with it “once things settle down” — as though things ever settle down.
Then one evening, not long ago, I sat down and did something unglamorous. I opened a spreadsheet, wrote my child’s name at the top, and underneath it typed a heading: What needs to be true when I am not here.
That evening changed something in me. Not because the spreadsheet solved anything — it mostly revealed how much was unsolved. But because for the first time, the question stopped being a fear and became a project. And fears paralyse, but projects have steps.
I want to share those steps with you. Not as a lawyer or a financial advisor — I am neither, and you must consult both. I am simply a parent a few kilometres further down this particular road, turning back to describe the terrain.
First, the reframe: planning is not pessimism
Readers of this blog know the four stages Gayatri teaches — resistance depletes, acceptance frees. Here is where I found that framework meeting my bank statements.
For years, my resistance to this planning was really resistance to a sentence I could not bear to write: my child will need care after I am gone. Avoiding the paperwork let me avoid the sentence.
But avoidance has a running cost. Every month I did not plan, a quiet background anxiety consumed bandwidth I could have given to my child, my marriage, my work. The unmade plan was a tax on every ordinary day.
Doing this work is not surrendering to a dark future. It is the deepest form of acceptance I know — and, strangely, the most liberating. The night I finished the first version of our plan, I slept better than I had in years. Not because the future was secured. Because I had finally looked at it.
The four pillars
When I finally studied this properly, I found that the intimidating mountain of “estate planning for a special-needs child” in India rests on just four pillars. Let me give you each in plain language.
1. Guardianship — because a will is not enough
Most of us assume a will covers everything. It does not. A will transfers assets; it cannot transfer care. For that, India has a specific mechanism many parents have never heard of.
Under the National Trust Act, 1999 — which covers autism, cerebral palsy, intellectual disability and multiple disabilities — parents can apply for the appointment of a legal guardian for their child, through the Local Level Committee (LLC) in their district. This matters twice: once when your child turns eighteen (because in the eyes of the law, your automatic guardianship as a parent ends at majority, even if your child needs lifelong support), and again for the question of who is appointed after you.
The Rights of Persons with Disabilities Act, 2016 adds a framework of supported decision-making and limited guardianship — the philosophy being that our children should be supported in making decisions, not simply decided for, to whatever extent they are able.
The action item is simpler than the legislation: locate your district’s Local Level Committee, understand the process, and put in writing — in your will and in your papers — whom you nominate as guardian, and a second name behind that one. Do not let a court answer this question cold, without ever having heard your voice.
2. The trust — the vehicle that outlives you
Here is the problem with leaving assets directly to a child who cannot manage them: someone else will manage them. Perhaps lovingly. Perhaps not. History — and every parents’ support group — is full of stories of inheritances meant for a vulnerable child that dissolved into a relative’s business or a cousin’s wedding.
The answer is a private trust: a legal container that holds assets for the benefit of your child, managed by trustees, according to rules you write while you are alive and thinking clearly. The money is never your child’s to be taken from, and never the trustee’s to keep. It exists only to be spent on your child’s care, in the manner you specified.
Then comes the question that stopped me for months: who will be the trustees? This is the emotional heart of the whole exercise, and no article can answer it for you. What I will offer is the principle I eventually settled on: do not seek one perfect person — they do not exist. Build a structure instead. Two or three trustees; a professional element (a CA, a lawyer, or a corporate trustee) alongside family; and clear rules that make the money hard to misuse even by someone imperfect. Structures are more reliable than saints.
3. The corpus — sizing the number honestly
Now the arithmetic that most of us have never actually done. I run financial models for a living in my business, and even I had avoided this one for years.
Sit down and estimate, honestly: monthly care costs today — caregivers, therapies, medical needs, food, shelter, the small comforts that make your child’s day. Now project that across a lifespan, remembering that your child may live fifty or sixty years beyond you, that costs inflate relentlessly, and that there may be no earned income on the other side of the ledger.
The number that emerges will frighten you. Mine frightened me. When I compared it against my existing life insurance cover, the gap was not a gap; it was a canyon. I suspect most families reading this are in the same position without knowing it — insured for a “normal” family’s needs, in a family whose needs are anything but.
Here is the strangely hopeful part: of all four pillars, this is the one where time is genuinely on your side. A term insurance policy sized to the real number costs far less than most parents fear, and a monthly investment begun today has decades to compound. The corpus is not built in a year. It is built by starting.
(While you are at it, ask about Niramaya, the National Trust’s health insurance scheme for our children — a small, practical piece many families simply do not know exists.)
4. The letter of intent — the document only you can write
The first three pillars need lawyers and advisors. The fourth needs only you, tonight, and it may be the most important of all.
No trust deed will record that your child eats only when the food is arranged a certain way on the plate. No court order will explain the exact song that ends a meltdown, the specific way the blanket must be folded, the difference between the flapping that means joy and the flapping that means the room is too loud.
You are the world’s only expert on your child. The letter of intent is where you write the expertise down: routines, foods, fears, medications, sensory triggers, comforts, the names of people your child trusts, the history no file contains. It has no legal force. It will simply be the most-read document your child’s future caregivers ever hold — your voice, still parenting, after you.
I will not pretend writing it is easy. Mine took many sittings, and not because it was long.
The order of operations
If the four pillars feel overwhelming, let me give you the sequence I would give a friend — because overwhelm is just a project that has not been sequenced yet:
- This week: check your life insurance against the honest number. If there is a canyon, close it with term cover. This is the cheapest, fastest risk you can eliminate.
- This month: write your will, and in it, nominate guardians — a first and a second name. Begin the letter of intent; even a rough first page is infinitely better than the blank one.
- This quarter: meet a lawyer about the private trust, and locate your Local Level Committee to understand guardianship for the years ahead.
- From now on: build the corpus, month by unglamorous month.
One step is all it takes to begin. The regulars of this blog will recognise that sentence. It is truer here than anywhere.
What it cost — and what it gave back
I want to be honest about the emotional price of this work, because no one warned me.
Filling these forms means writing your own death in black ink, on stamp paper, in triplicate. It means describing your child, whom you know as laughter and warmth and a particular weight against your shoulder, in the cold vocabulary of “beneficiary” and “person with disability.” There were evenings I closed the laptop and could not speak.
And then, on the other side of it, something I did not expect: lightness. The 2 a.m. question still visits — I do not think it ever fully stops. But it arrives now at a house where the lights are on and the papers are in order. It has lost its power to paralyse, because it has been answered — not perfectly, but concretely, and in writing.
These documents will never appear in an album. No one frames a trust deed. But I have come to think of them as the most unsentimental love letters I will ever write: pages that will hold my child steady on a day I cannot be there to do it myself.
The question is After us, then what?
The answer, it turns out, is not a feeling. It is a folder. Go and start yours.
Connect with Arvind Ramani: Email: Ramani.arvind@gmail.com | Phone: +91 9916-999-152
[Author, Arvind Ramani is a parent, and the co-founder of a talent advisory firm. This article shares personal experience and is not legal or financial advice; please consult qualified professionals for your family’s situation.]
