My son Sarvagya got diagnosed at the age of 3 years. At that point of time, I decided to give up my career since I wanted to support him fully.
Just like any other parent, I also struggled to first accept his diagnosis and then to find a genuine therapist. However, for initial few months, I was very confused and depressed as nothing seemed to work. My anxiety and insecurities were at the peak. Literally, the thoughts about how his future would be, didn’t let me sleep.
Like all other parents, I also joined number of Parents groups where all issues related to kids, be it OT, Speech or special education were discussed day & night and indeed were helpful. However, over a period of time, I started realising that nobody was talking about the financial aspect of autism.
Being a Chartered Accountant, though I had given up my career long back, general ignorance about the importance of financial planning devastated me. At that time, I found myself in that category too. Despite being a finance professional, I too got caught in the web of challenges, therapies & never ending expenses and ended up being ignorant about my own son’s future financial planning. This is when I decided to first plan a secure financial future for my child. Just to share, I am in the process of creating a Special Needs Private Trust for my son. Once I revisited the long forgotten financial basics, I decided to try my bit to create awareness about financial planning with regard to the special needs families.
What I have experienced in my short journey is that so far as autism is concerned, financial planning is the most ignored aspect. By the time we realise how much we need it, it’s already too late. However, it’s nobody’s fault. We, special parents, are so over occupied with daily unexpected challenges that thinking about financial planning takes a back seat.
Life is very unpredictable. It is very important to start planning as early as possible. As we grow older, thoughts about the future and how our children will be provided for after we are gone start haunting us day and night. In a situation, where a couple has a special needs child, these thoughts literally scare them every moment from the day they discover about their child. “What after us?” is what they constantly keep thinking because when you have a special child, not only do you have to financially provide for that child after you’re gone, but you must also ensure that the child is well taken care of & that parents’ death does not compromise the child’s welfare and mental health in any way.
Planning for the future when you have an autistic child can be difficult & mentally stressful, but if you start early and take the right approach, you can successfully pave the way for a financially independent future for your child with autism, even when you both are no more in this world.
Being a finance professional and a special parent, I have started this series of ‘Financial Planning for Special Needs Families’.
Today’s blog is an introduction to my thoughts regarding importance of financial planning for special needs families. In coming weeks, I will be discussing briefly some very important financial aspects viz Estate planning, Legal guardianship, various income tax benefits, Special Needs Trust, Will, Investment Planning, etc. I will try to share everything whatever little knowledge I have. Hope this initiative of creating awareness regarding Financial Planning will be helpful to all.
Thanks for patient reading,
Author Shivani Lohia
Shivani Lohia is a Chartered Accountant by profession and mother to 8 years old child on the autism spectrum. The cause of autism awareness is very close to her heart and she strongly believes in equal education for all & strongly advocates inclusion. She has been homeschooling her son since he was 5 years old.
Creative representation of this blog is done by our extremely talented CreativeSaathi associate Morpheus Nag