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Business News/ Money / Personal Finance/  Opinion | How having a financial plan can help caregivers protect special children
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Opinion | How having a financial plan can help caregivers protect special children

Setting up a trust will take care of basic needs and will also act as a safety net

Photo: iStockPremium
Photo: iStock

For most neurodiverse disorders, families often use therapies and lifelong management support systems as opposed to short- or mid-term cures for diseases. The covid-19 pandemic poses unique challenges to the autistic community—the inability to practise social distancing being the most crucial one. Individuals who rely on their guardians for full-time support cannot be safe in solitary quarantine or if their guardians are in solitary quarantine. Our medical system isn’t sensitized to the needs of special children which is a nightmare for families.

A child with cerebral palsy died in China because his father, who was also his sole caregiver, was quarantined in a hospital and the child couldn’t manage his basic needs of food, water and sanitation on his own. Once this came out in the papers, the neurodiverse community came together to think of solutions for India.

The change in routine, and inaccessibility of medical facilities and support therapies during a lockdown can cause high stress and anxiety among individuals with autism. Parents should develop an emergency contact list and sensitize the people on that list about their child’s needs, contact local volunteers or NGOs and ensure there is sufficient food and medical supplies.

What else can parents do to prepare? A great starter kit would include five things—unique disability ID (UDID), legal guardianship when the child turns 18, a Will, a trust and financial planning.

Usually most people think about this process when a bank asks them for extra documentation to open an account. That too, if you’re lucky enough to be dealing with a bank that follows protocol and is aware that extra documentation is needed for parents to operate a bank account on behalf of a special child above the age of 18. Now a parent can easily do that through the National Trust Act portal set up by the central government. The website, which still uses obsolete formats, allows parents to upload basic information about the family and grants them a legal guardianship certificate after verification in about four to six months.

One of the most common misconceptions parents have is that they can make these decisions anyway, because they’re parents. Distinguishing the roles of a parent and legal guardian is important. A simple way of looking at this is parents can’t act as signatories on legal and financial documentation for neurotypical children when they become majors. In order to demonstrate the need for parents to be able to act on the child’s behalf, they need to provide substantial reason (proof of disability) and proof that they are authorized to do so.

On the other hand, some parents give full access to accounts to individuals with special needs to empower them and make them financially independent. This can be very scary as managing money is a lot more than depositing and withdrawing cash. I know of a young man with autism who was travelling on a bus (his usual commute to work) and wrote a cheque to his co-passenger donating his entire monthly salary for the passenger’s “sick child". His ability to manage his own finances was suddenly under question and the family was overridden with pessimism. It’s important to strike a balance between independence and safety. To my mind, the only way to do that is by setting up a trust for the main corpus that will take care of the individual’s basic needs and act as a safety net.

A trust will let parents and other family members contribute funds for the benefit of the atypical child. The mechanism will also protect against any potential financial abuse and ensure that the funds are spent wisely. Setting up a safety structure (Wills, trusts and guardianship) usually costs 75,000 to 3 lakh, depending on the professional or firm’s pedigree and complexity of the family scenario. However, if your net assets, including the house you live in, amount to 1 crore or more, it’s absolutely unavoidable. Creating liquidity is most important, otherwise you’re risking your child’s safety based on someone’s proactiveness.

Similarly, a UDID card is important for an individual with disability. It’s the online database of persons with disabilities across the country accessible through a centralized web application. This is essential to help the child if he or she is separated from the guardians by showcasing the child’s inability to find his or her way back independently. This need is not solved by the Aadhaar card. Take the case of Tarun Gupta, an autistic teenager who was separated from his family in October 2019; a railway police officer put him on an outstation train not wanting to “deal" with him.

It’s important that parents utilize this time well to get safety measures and precautions in order. Not only will this benefit the special child, but also liberate parents of the constant stress and worry of the child’s well-being in their absence. Uncomfortable questions today will make for a comfortable tomorrow.

Shreya Jain is founder and CEO, Reservoir, a community platform for neurodiversity

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Published: 01 Apr 2020, 10:38 PM IST
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