"Their parents could make a trust fund which releases a certain amount every month for their needs. Even so, the trustee would have to be someone who takes care of their other needs as well," suggests Merry Barua.
By Ritika Jain
“Who will look after my child after I am gone?” This is probably the number one question from parents who have a child who is differently-abled or has special needs. When you’re blessed with faculties that enable you to pick up skills that help you make a living for yourself, you tend to take them for granted. Unfortunately, the future is a bit more uncertain for some people. As parents, we would all like to provide for our children and see them settle down comfortably. So, you can imagine how overwhelmingly worrisome this concern is for an individual whose child may be schizophrenic or autistic.
The thing with neurodiversity is that people can fall anywhere on the spectrum, from being able to independently paint and manage their own medication to not even being able to groom themselves and having to be fed and cared for 24×7. The socio-economic conditions aren’t the same for everyone either. Some people are well-adjusted within aware and nurturing families while some are further distressed by being made to feel odd or a burden. Either way, they’ll likely experience stigmatisation from society, which is a further stressor. In India, we still have a long way to go in terms of awareness and empathy.
The statistics are staggering. One in 3,000 Indians are reported to be schizophrenic. There are said to be three million people affected by Autism Spectrum Disorder in India. There are other problems like Cerebral Palsy or genetic disorders like Down Syndrome that affect a person’s physical and cognitive development. While some good initiatives are being taken up by the government as well as NGOs, they may not be affordable for all those in need, so in reality, the responsibility of caregiving duly falls on relatives or well-wishers. But to an extent, the society-at-large also must be inclusive and supportive of those in need. Given ahead is a list of organisations where you could send a donation if you’d like to contribute to a good cause or volunteer to make a difference.
In conversation with a self-starter activist
Merry Barua, Director, Action for Autism and mom to an autistic son, agrees that there’s a large segment of population which requires arrangements to be made for them after their parents are gone. She says, “Traditionally, it wasn’t as big an issue because we had joint families but increasingly, that’s no longer true even in smaller towns. There’s a cost to privacy. We no longer know how well our neighbours are doing. People are constantly moving because of jobs too. In developed nations, there are systems or group homes sponsored by the state, or social welfare workers checking in on those who stay in their own homes. Unfortunately, there’s no such provision here yet.”
She suggests, “There are people who could perhaps manage living on their own but may not be able to manage their finances well. In these cases, their parents could make a trust fund which releases a certain amount every month for their needs. Even so, the trustee would have to be someone who takes care of their other needs as well. I’ve had parents say ‘We thought a sibling would take care of them but we now realise that’s not true.’ As people get older, sometimes it’s not a question of a sibling being loving or not. They could be settled in another country or in a job that allows them no time to devote themselves to a loved one, or they could pass away before the one who needs their help.”
She emphasises, “There will be a whole lot of others who will not be able to live independently. What will they do? The National Trust does their bit but they too have limited resources. You need more group homes for assisted living. Although a good place costs money because you need to employ well-trained staff and provide adequate facilities, it’s a good idea is for people to get their ward familiar with such a home while they’re still around so the transition is smooth. It’s doesn’t have to come as a shock of being parent-less or being uprooted.”
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Barua adds, “Our facility might be in a rural area because land in the city is unaffordable but we can assure you of monitoring the quality of work being done there. We teach them self-help and vocational skills, even if they haven’t learnt them earlier because you need to have some kind of purpose in life. We have placed adults with autism in jobs. We’d like for them to go out and work in the day and come back at night, even if it means making arrangements for them to reach the workplace.”
Legally speaking
Varun Kathuria, a lawyer practising at the Delhi High Court, advises, “These days wills are contested and till the time anything is proven, things are in limbo. That’s why registering a trust fund is better. You should just be clear about who the beneficiary is, what the clear objective of the trust is and give specific guidelines for the trustee who’s managing the funds. A public trust fund is more charitable in nature and a private one is what you would set up to safeguard a family member. For example, you may want to give a salary to the caretaker of the beneficiary or a maintenance allowance for a property being looked after. Else, you may want rental income from an immovable asset to go towards the medical expenses of your child. At the same time, you’d want your wealth to grow and not run out. Hence, you must be sure of what powers the trustee has. For example, he/she may have the power to invest in government bonds or certain bluechip mutual funds. It’s important to appoint someone with a sound mind who’ll maximise returns and not someone irresponsible who’ll just squander away your money. It’s like investing in an insurance policy but with clauses.”
Some useful resources:
The National Trust
Vikaspedia – Parents’ Corner
Chandigarh: GRIID
Dehradun: Latika Roy | Project Arunima
Delhi NCR: Autism India
Mumbai: Children’s Aadhar
Bengaluru: Parivaar-NCPO
Hyderabad: Samarth
Kolkata: Ananda Lok
Chennai: Sri Arunodayam | Vasantham
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