“Who Will Care When We Are Gone?”
By Advocate Rizwan Ali
In my chambers in Dehradun, over the last 17 years working with the Latika Roy Memorial Foundation (Latika), I have sat across from hundreds of parents. While their backgrounds vary, the look in their eyes is often the same. It is a look born the moment they received their child’s diagnosis—whether it was Autism, Down Syndrome, Cerebral Palsy, or Intellectual Disability. It is a look of deep love shadowed by a terrifying question:
“Rizwan Bhaiya, what will happen to my child when I am no longer here?”
Today, on World Disability Day 2025, I want to address this question not with sympathy, but with a strategy. I want to talk about Special Needs Legal Planning.
The Fear of the Future
For parents of neurotypical children, turning 18 is a celebration of independence. For parents of children with disabilities, however, 18 is often a cliff-edge. They worry: How will my child operate a bank account? If I leave them my house or savings, will they be cheated? But the fears run even deeper and darker. Parents are haunted by the thought that their child’s legal capacity might be challenged. They stay awake asking, “What if the system decides my child is legally unfit to hold assets? Will the government seize control of the savings I worked a lifetime to build? Or worse, will a corrupt relative or stranger exploit a legal glitch to hijack the property and physically harm my child to get to that wealth?”
These are not just financial worries; they are fears for their child’s very survival.
These fears often paralyse parents. I have seen families hoard money but fail to create a legal mechanism to protect it. This anxiety affects the parents’ mental health and, inadvertently, the child’s development. But there is a solution.
Property & Banking Rights: Overcoming the “Legal Capacity” Barrier
There is a widespread myth that individuals with Intellectual Disabilities, Autism, or Down Syndrome cannot hold property in their name or open bank accounts. As a lawyer, I want to clarify: The law grants them the full right to own and inherit property and control their financial affairs.
The challenge lies not in owning the asset, but in the “Legal Capacity” to manage it—basically, the ability to sign contracts or understand complex banking transactions. If a bank manager or property registrar feels the individual does not understand the transaction, they may deny service. We solve this through two legal frameworks:
- Supported Decision Making (under RPWD Act, 2016): For individuals with higher functional abilities, we use this model. The individual remains the primary decision-maker but utilises a support person (a trusted family member) to help them understand and communicate their decisions. This validates their legal capacity to sign documents without stripping them of their autonomy.
- Legal Guardianship (under National Trust Act): For those requiring higher support, the Legal Guardian steps in to provide the necessary legal capacity. With a Guardianship Certificate, the individual with disabilities with the help of Guardian can legally open and operate bank accounts and manage property transactions. This ensures that while the asset belongs to the person with the disability, the operation is safe, secure, and recognised by financial institutions.
What are Special Needs Legal Planning?
In the United States and Europe, there is a specialised breed of lawyers known as “Special Needs Planning Attorneys”. In India, this field is still in its infancy. As the only lawyer in Uttarakhand providing this specialised, holistic service, I define Legal Planning as more than just drafting a document.
It is a comprehensive ecosystem that establishes legal and financial safeguards to ensure your child’s care continues uninterrupted. It bridges the gap between the law, finance, and the practical reality of disability.
The Roadmap to Security
To secure your child’s tomorrow, we must act today. Here is the framework we use at Latika to make life secure for these families:
- The Foundation: Essential Documentation
Before we talk about property, we must ensure identity. Every child must have an Aadhaar Card, a Birth Certificate, and most importantly, the UDID Card (Unique Disability ID). These are the keys to accessing rights. Without them, legal planning has no legs to stand on.
- Utilising Government Benefits & Rights
The Indian government and the Rights of Persons with Disabilities (RPWD) Act, 2016 provide a robust safety net, yet many of these rights go unclaimed due to a lack of awareness. As part of comprehensive Legal Planning, we ensure families maximise every available scheme to build a secure future:
- Financial & Tax Relief:
- Tax Exemptions:Under Section 80U (for the individual with disability) and Section 80DD (for the parent/dependant), families can claim significant income tax deductions. I advise parents to not just save this money, but to invest these specific tax savings directly into the child’s Trust.
- Low-Interest Loans:The NDFDC (National Divyangjan Finance and Development Corporation) provides concessional loans for starting small businesses or pursuing higher education. This is a vital tool for empowering your child to become an entrepreneur or a skilled professional.
- Education & Employment Opportunities:
- Job Reservation: The law mandates a 4% reservation in government jobs for persons with benchmark disabilities, ensuring equal opportunity in the workforce.
- Education Quotas:To ensure your child gets the best academic start, there is a 5% reservation in higher education institutions (government and government-aided). Furthermore, there is an upper age relaxation of 5 years for admission, acknowledging that our children may face developmental delays but still deserve access to quality education.
- Protections for Employed Parents:
- Exemption from Transfers:Parents employed in the government sector are eligible for exemption from routine transfers and rotational postings. Asserting this right ensures that your child’s therapy, medical team, and schooling are not disrupted by your job moves.
- Lifetime Security & Healthcare:
- Lifetime Family Pension:For government employees, this is a critical asset. Unlike standard rules, a child with a disability is eligible to receive the Family Pension for life after the parents’ demise. However, the medical and legal paperwork must be perfected while you are alive.
- Health Insurance:Schemes like Niramaya (by the National Trust) and Ayushman Bharat provide health insurance specifically covering conditions like Autism and CP—conditions that private insurers often reject.
- Travel Concessions: Using the UDID Card, individuals are entitled to Railway Concessions (up to 75% in certain classes) and discounted Bus Passes, reducing the financial burden of traveling for treatment.
- The Legal Safety Net: Special Needs Wills & Trusts
This is where the most heartbreaking mistakes happen. Parents often fall into one of two traps. Some think, “I will write a simple Will leaving everything to my child.” Others, fearing their child’s lack of legal capacity, make a graver error: they do not give anything to the child with a disability. Instead, they leave their entire wealth to their other children, assuming, “My other kids will take care of their sibling.”
Stop. This is a dangerous assumption. Life changes—siblings get married, move away, or face their own financial struggles. Relying on an informal promise often fails, leaving the child with special needs vulnerable. We need a more sophisticated, legally binding approach.
- The “Special Needs Will”: Appointing Guardians & Safeguarding Rights
We draft a specific Special Needs Will that goes far beyond distributing money. Its primary focus is the care and safety of your child.
- Appointment of Legal Guardian:This is the most critical clause. Who will step into your shoes when you are gone? The Will must clearly nominate a Guardian to take care of the child’s personal and legal decisions.
- Safeguarding Property:The Will must be drafted to ensure that the inheritance does not become a threat to the child’s life. It prevents scenarios where the child is exploited or tricked into signing away property.
- Family Support System: A Special Needs Will takes into account the entire family dynamic—siblings, relatives, and caregivers—creating a legal support system that surrounds the child with protection rather than leaving them isolated.
- The Special Needs Trust: Managing Finance without Burden
Leaving a large sum of money or property directly to a child with an intellectual disability can be disastrous. They may not have the legal capacityto manage it, or holding assets in their name might disqualify them from certain government welfare benefits. However, disinheriting them is not the answer. - The Solution:We create a Private Family Trust or a Special Needs Trust.
- How it Works: In this structure, the assets are held by the Trust for the benefit of the child. A Board of Trustees (which can include trusted family members and professionals) acts as the financial manager.
- The Benefit: This ensures the money is used strictly for the child’s care, therapy, and comfort, without the child carrying the heavy burden of financial management or facing the risk of corruption. It separates the benefit of wealth from the risk of ownership.
- The “Letter of Intent”: The Heart of the Plan
Legal documents are cold; they don’t know that your daughter loves 90s Bollywood music or that your son gets anxious if his toast isn’t cut diagonally.
I urge every parent to write a Letter of Intent. This is not a legal document, but an emotional instruction manual for future caregivers. It details the child’s routine, likes, dislikes, medical history, and quirks. It ensures that the quality of life remains, not just the financing of it.
A Call to the Legal Fraternity
While I am proud to serve families in Uttarakhand, one lawyer is not enough for a nation of 1.4 billion. In the West, Special Needs Law is a thriving practice because it is necessary. We need more Indian lawyers to specialise in this compassionate jurisprudence. We need to move from being just “litigators” to being “planners.”
Conclusion: Securing Dignity, Not Just Assets
Legal planning is not just a financial task; it is a powerful act of human rights. It transforms your child from a dependant into an empowered individual with their own resources, standing, and dignity.
By writing a Will, creating a Trust, and appointing Guardians, you ensure your child lives with respect—protected from exploitation and free from the need for charity. You are ensuring they live on their own terms, in their own home, supported by the safety net you designed.
I have seen the worry vanish from parents’ faces the moment these documents are signed. The heavy burden lifts because they have replaced uncertainty with a concrete, enforceable guarantee of care.
On this World Disability Day, let us move from anxiety to action. Do not let fear hold you back. Use the law to build a shield around your child. Start your legal planning today to make their future not just safe, but dignified and beautiful.
(Rizwan Ali is a Dehradun-based lawyer and a Special Needs Legal Planning Expert with 17 years of experience. He works with the Latika Roy Memorial Foundation (Latika), a renowned organisation providing specialised professional services to children and adults with disabilities.)
