Special Needs Parents Here Is Your Answer To ‘What After I Am Gone’ Worry!

While cleaning a cupboard, I came across an old piece of news in the paper where a pilot father and an air-hostess mother died within a year of each other leaving their two kids orphaned. When the relatives only laid claim to the bank accounts and family property, the kids called their father’s friend, another pilot for help. This man took the children under his wings by taking the legal guardianship and now they are living with his family. What a story of loss, faith and humanity!

Being a parent my heart went out to the little kids who had to go through so much at this tender age, but this also shook me to the core thinking if this can happen to two healthy, working individuals in their early 30s then it can very well happen to me or to anyone else.

We all have heard the quote ‘Death is inevitable‘ but we never think it can come this soon or can wipe away all that we’ve built over the years. The kids who we protect from every possible harm can be left to destiny and mercy of others. But what are our choices? Being a parent of two adorable children; one who wants to explore the world and the other with special needs, the spectrum for us parents is extra huge. Yes, God forbid if something were to happen our typical children will find a way to bounce back sooner or later and we should be glad that they will. But they will also have the responsibility of their special sibling whether they are ready or not and we can’t deny the possibility that our extra special kiddos might never hold any gainful employment and may need financial assistance all their life.And as parents we need to make sure that we think of all these scenarios today to help them get back on their feet if and when the need arises.

I know it may sound weird but thousands of times I have tried selecting the right set of people from my family, friends and relatives who I could trust about taking care of my kids in case of an unfortunate incident. And I’ve always found it difficult to trust  anyone one hundred percent. but it is important that we prepare ourselves mentally for delegation of the most important responsibility of our lives.

There have been a few things that have made some sense to me while speaking to other parents and doing some research online and I would love to know if you have given any serious thoughts to these possible choices…

Writing A Letter Of Directions Or Intent
Writing all about your savings, their maturity, the whereabouts of the documents, about someone who would work as a care taker till your typical child attains adulthood. This letter should most definitely also have a list of contact information for your child’s physicians, therapists, and other medical support people as well as current medications and their dosage. It should also include the medical history of your child, various medical interventions, allergies, food preferences and any or all information that might be important for the caretakers.

Write A Will
While a few of us might think that the will is only for multi billionaires, but the truth is  that in case of a tragic event, the family goes through the unimaginable and in absence of directions or a will it becomes extremely challenging for rest of the family to get back to the old life. A WILL will not only help you in making an informed choice well ahead of time but will also give the children the directions to move on.

Start A  Trust
A lot of parents of children with special needs start a trust for their children however there are many do’s and don’ts which parents need to ponder carefully before plunging into anything. Things like who they would want to be the trustee of the trust or if they would want a single trustee or a co-trustee or when and how money can be distributed to the children, should be thought out very carefully. There may be other considerations based on the state laws and regulations which needs to be researched too.

Apply For Guardianship
Once children turn 18, they’re considered adults in the eyes of the law. Many a times the adult in question is not capable of taking independent life decisions and may need your guidance. By applying for a legal guardianship you can maintain the same supervision and control you had over your child when he/she was younger. While still alive parents can approach National Trust for the same and they in turn can appoint a committee of members like a district collector, a doctor, a psychologist and others to look into the needs of the person in case of a sudden demise of parents.

Start Saving Early
Be it mutual funds, savings account, fixed deposits, shares  or any  other way which suits your future financial needs but it is extremely important to start early and not just for your child with special needs but for their siblings too. A lot of times we overlook the needs and demands of our ‘typical’ children assuming they don’t need us or can take care of themselves but when it comes to paying for their higher education and aspirations, we cannot NOT have the funds saying it all got used with their special sibling. So striking a fine balance between what is important for who is a decision every parent should very carefully make.

Making An Informed Choice
There was a recent video that was shared by another parent where an interesting experiment was initiated with a group of parents and their children. Children were asked to draw a picture of what they would like to become in future while parents were asked to paint what they would like their children to become in future. They were told not to interact with each other during the course of the activity. At the end of the experiment,parents and children were asked to reveal their ideas. And to everyone’s surprise the pictures were contrasting. This little experiment tells us all about the future challenges and how we need to be well prepared and encouraging for alternate careers that our children might choose . And it might not only be for our typical children. Our children with needs too needs looking after longer than others and to be prepared in advance for the same is paramount.

P.S. I was recently told about this interesting app called ‘The homework app’ which helps you find out the education cost for various professions across different countries both in current time or in the future thus helping you calculate the right amount to start saving.

Build Your Network
Building a network of friends for your child from the community is extremely important. The child should be taught to interact and be comfortable in the community, with the people who know and regularly interact with him. This can do wonders for your ‘after I am gone worry.’ The neighbours, the mall guy, the grocer, the ice-cream man, other special needs parents and even children at the park should interact socially with your child. Such connections not only build the self esteem of your child but also help him/her stay safe in case of no direct supervision.

 

Train Your Child
Every parent should train the child to be meaningfully engaged. This might not only be for financial independence but to stay engaged and have a routine.  This training and exposure should start early and the transition training should be provided along with pre vocation and vocational skills. A lot of adults with special needs are finding work, getting engaged in employment and also living semi independent lives either in group homes, with their parents or in assisted living set ups. The parents should prepare their child for this life, for training them with all the household work and other important things that these children might need to live on their own with limited supervision. A few years ago a set of 5 parents came together and helped their daughters set up an independent house with a housekeeper. The arrangement was expensive but it paved a way for many similar social experiments. You can read more about it in one of my old post here…http://www.twominuteparenting.com/a-parent-of-child-with-down-syndrome/

The gist of all the pointers above is a sound financial planning. For the child’s aspirations and future whether typical or special needs, a parent needs to plan well ahead of times and explore all the available options. It could be child education policies, mutual funds or any other choice that deems fit. Researching, exploring, discussing, comparing and starting with your action plan will not only give you peace of mind but will also help you get over with your ever mounting worry of ‘What after me’.  So, Sit with your partner to know your goals, hire a planner or go research but be prepared and do your homework well in advance.

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aniday's picture
aniday

That is thought provoking and very very relevant!! Thank you Deepa. Would you also be able to recommend professionals who can help create a trust?