Part 12: The Future
I began this series in response to my son Krishna’s frustrating hospital experience.
I am surely not the only autism parent to have gone through something similar, and so I wanted to spread awareness.
Autism parents also carry the enormous responsibility of preparing for their child’s future care.
Dear autism parent, when you know that your child may one day hold a job, earn for themselves, and function independently in society, your responsibility for their future care includes:
• Equipping them with the necessary education and skills
• Creating whatever financial cushion you can
• Helping them build or join a suitable community and support network
In a little more detail, all of this involves adequate health insurance and medical financial planning, because therapies, hospitalizations, procedures, medicines, investigations, and long-term care are expensive, and many insurance policies offer limited or unclear coverage for developmental conditions, therapies, or long-term support needs.
It also involves legal and financial planning through wills, trusts, nominations, disability certification (UDID), and guardianship frameworks, so that your child’s care is protected not just emotionally, but legally and financially.
You need to plan for inflation, living expenses, medical needs, your own retirement, and countless other variables.
You also need to understand the fine print of health insurance.
Will your policy cover hospitalizations related to coexisting medical conditions?
Will it cover therapies?
Will it cover long-term residential or assisted care?
What happens when you are no longer around to renew, manage, or advocate?
Parents often spend so much on therapies in the child’s early years that they neglect retirement planning and corpus-building.
When you know that your child may not be able to function independently in society, your responsibility becomes more complex.
The question—what after us?—looms large.
As Krishna’s parents, my husband and I live with this question every day.
This is what we are working towards for his future:
• A financial trust to fund Krishna’s living expenses for the rest of his life
• A detailed documentation framework explaining Krishna’s day-to-day needs, routines, preferences, and care
• A legal guardian
• A place where Krishna will be safe, cared for with love, and engaged in meaningful activities that help him live a fulfilling life
Krishna does not have siblings.
Even if he did, we would not place the responsibility of his daily care on them, because it would not be fair.
It is an enormous burden.
And Krishna has the right to a life where he is the focus of care, not a hanger-on in someone else’s life.
“Where is the hurry?” another parent once asked me. “He is only ten. You have plenty of time.”
This kind of thinking can catch you unprepared.
One day, retirement arrives.
If your autistic child cannot earn independently, then you must plan to earn—and create—for their lifetime.
You need to plan for inflation, living expenses, medical needs, your own retirement, and countless other variables.
You need time to think, plan, revise, and build.
You need time to search for—or create—a place where your child can live a safe, joyful, and meaningful life even after you are gone.
So yes—it is a very good idea to have plenty of time on hand.
We hope we do.
With this, I am winding up this series.
I will continue sharing Krishna’s stories, so keep watching this space!
