The SpecialMoms Parenting Magazine 4th Issue | Page 13

ions For Special Needs Parents
having multiple birth defects, my husband actually
passed out in the delivery room and spent the next
three days in ICU having suffered a traumatic brain
injury. My daughter spent a few hours with me before she was taken to the NICU so they could monitor her vitals and attempt to feed her. Three out of
four members of my family – me, my husband, and
my newborn daughter – were all patients at the same
hospital. My oldest daughter was three and a half at
the time and was being cared for by family members
at home. As I exited the hospital, leaving my husband in the ICU and my daughter in the NICU, I
could barely comprehend how our lives had changed
so dramatically in the three days since I had walked
into that hospital with my husband at my side and
my daughter in my belly.”

without a will. The dependent notebook has a checklist with key contacts,
documents, finances
and other important information for not only
your minor children but
anyone with special needs
under your care. It takes
less than 10 minutes to fill
it out.

You can read more about their roller coaster ride of
Ally’s birth and the day-to-day challenges of being a
military family with a special needs child here.
I spoke with Ellen Linares, a financial advisor specializing in special needs families. She stressed the
importance of including the extended family in
the planning process and said, “Some families don’t
realize they should not name a special needs family member as the beneficiary of any financial asset.
Even a modest inheritance can make them ineligible
for government benefits.” There are ways to mitigate
this risk with a special needs trust, but that is just one
piece of the puzzle. Ellen recommends the website A
Special Needs Plan as a place to start. It has a wealth
of information and a free guide book.
Whether you have a will or a trust or more likely
don’t, my advice to you is the same: equip at least two
people with simple, yet vital, instructions on how to
care for your children in an emergency.
I’ve created TheTorch.com so that parents and caregivers have the tools necessary to share essential instructions regarding the care of their children, with or
facebook

Top: Ally, 8 weeks, Middle: Ally, 8, Bottom: Ashli Matus George, Kristin
Matus Kelso, Ally Kelso, and Terri Grant Matus

Understanding how to help you pay your bills, care
for your children, or where to look for important
documents saves your loved ones the time and stress
of looking for something that may or may not exist.
By passing your torch you’ve made a difficult time
less difficult.
Equipping someone else with all the information
they need to care for your children in an emergency
is a conversation every special needs parent needs to
have.§
Lenore Vassil is the founder and CEO of The Torch, a software company headquartered in Charlotte, North Carolina.
The flagship web application is an online personal organizer
you share with your loved ones so they can navigate your life
if something happens to you.

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