When God has other plans...

The curve ball I am alluding to here is a health-related problem some of us face with our children, especially. When there are mental health issues in our children, life changes drastically for the family, especially parents.

Most of us have not been impacted thus but we know friends and relatives who are grappling with this problem. The mental health issues can be anything – autism, downs syndrome, anxiety disorders, depression, schizophrenia, bipolar disorder etc. There is an entire spectrum of such disorders that do not allow a person to go about their life normally and makes them partially or fully dependent on their parents/ family.

This is extremely sapping for the family as they wonder why they have been singled out for such special treatment. Many times, it takes time for the family to acknowledge the condition, reconcile to the situation and finally accept it.

The challenge before such parents is how to get their children normal enough to integrate and become part of the mainstream society. Many times, this is a major challenge.

What also worries such parents is what will happen to these children when they are no more. Some of them ( depending on the ailment and condition ) do not have the capability to manage their affairs, much less their money.

The responsibility willy-nilly falls on the shoulders of siblings if there are. The problem compounds if there are no siblings and they need to depend on the extended family.

What are the options before such parents?

Rehabilitation – This is what parents hope for. In some cases, it does happen. With medicines and therapy, some of these individuals become near normal. They are able to work and take care of their affairs fully or to a great extent. This is the best outcome one could hope for.

However, the situation is not always so conducive. Many of them do not come to a stage where they are normal enough to integrate with the mainstream. Infact, some of them are far from it and would actually require a lot of help on a day-to-day, ongoing basis.

This poses enormous strain and pressure on the parents to take care of their wards throughout life. In many cases, it may involve stays at rehab centers, hospitals from time to time as well as therapy, counselling, doctor visits etc. during the entire time. This can be both emotionally and monetarily draining.

The monetary problem – For most people, saving enough money to live on during the retirement years is a challenge by itself.

For those with special needs children, they would need to save enough not only for their lifetime, but for their children’s lifetime as well. Also, they will need money all along to spend on doctors, hospitals, medicines, therapists etc., that can all add up to a pretty packet.

But, there is just no option for these parents but to soldier on. Such parents have no option but to be frugal and use up all assets, including legacies, to ensure that finances are adequate.

Who after them? – This is a question that parents of such children worry sick about.

They will take care of their wards as long as they are around. Who will offer them care after they are no more? Who will take care of their needs?

Who will take them to the doctor and give medicines? What will their children do in the absence of the locus around which their lives revolved?

There are no easy answers. Many parents are searching for appropriate facilities in which their children can stay. But such facilities are far and few between. And those that are there are quite expensive. Hence, this is indeed quite a problem.

How will they manage their finances? – This is another worry for parents. Many children will not be able to competently manage their finances. Some of them may not even be able to do basic math, forget about properly investing and managing the money.

The solution will probably be in the form of a trust that has been specially created for the welfare and upkeep of their children. The trust created for the children’s welfare can be managed by the parents themselves, during their lifetime. After that, relatives or close friends and well wishers can manage the trust. There are also professional trustees to manage the trust, in the absence of someone suitable.

The kind of trust ( revocable & irrevocable ) to be formed needs to be thought through carefully through, as both have their advantage and disadvantages. A trust becomes a separate entity in some cases and accounting, audit and tax filing would become necessary.

Forming Trust through Will – Wills are instruments that gets triggered after the lifetime of a person. In the context of our discussion, a trust can be formed for the benefit of the special child through a will too. The only disadvantage here is that one would not know if the trust gets created & setup properly for the child’s benefit.

Forming a Trust when the parents are alive has the clear-cut advantage of setting up the trust and ensuring it’s smooth functioning.

These parents will have to at some point consider creating the trust as such children are vulnerable and leaving the wealth in their name to be managed even by close relatives is fraught with danger and undesirable consequences. The trust objects and conditions need to be clearly defined so that even future trustees will have to operate within the overall bounds set in the Trust document.

All in all, this is a delicate situation that needs to be handled with patience, maturity, and emotional understanding. Rehabilitating & helping them live a near normal life is what such parents would strive and wish for. That happens in some cases, not all.

Hence planning finances well and charting out as to how the child will be looked after in the future is very important. Parents of these children will have to think through properly and plan well.