INCLUSIVE FAMILY
Financial Planning for
Kids with Disabilities
How to start the process of saving
money and securing support for
your child’s future
BY JACQUELINE RENFROW
inancially planning for a child’s future
is a difficult process for many parents.

It means facing the reality that you won’t
always be around and the uncertainty of
not knowing what your child will need,
both financially and emotionally, for years
to come. Add the stress of planning for the
future of a child with a disability, and the
concept can be completely overwhelming.

“Financial security is one of the
cornerstones of well-being for people with
disabilities,” says Tia Marsili, director of
trusts for The Arc of Northern Virginia
Special Needs Trust (SNT) program. Marsili
and her team manage trust services and
support for families and individuals with
all disabilities in Virginia, Maryland and
Washington, D.C.

“The biggest challenge for starting
the process is overcoming the hurdle of
navigating convoluted systems,” she says.

invested money—when emphasizing the
need to start financially planning as soon as
possible. “The most powerful force in the
universe is compound interest,” he says.

Once parents are ready to begin the finan-
cial planning process, Bogin recommends
seeking out a seasoned professional. As an
advocate who helps parents put trusts and
wills into place, he works with financial
planners to assist families in preparing for a
multitude of needs, from who will take care
of the child (if needed) after the parents are
gone to how much this care will cost over a
span of many years.

“It’s not a do-it-yourself process,”
Bogin says. “You don’t go on the Web and
download documents and think you’ve done
a good job.” He recommends consulting
with a lawyer and financial planner who have
experience in this field.

When to start planning, saving
During an initial trust and will meeting, an
attorney will most likely recommend putting
together a life-care plan, which is a blueprint
for providing the economic security and
services that someone with special needs will
require over his or her lifetime. This document
is evolving as circumstances changes.

Don’t panic about creating a plan, says
Ruta Kalvaitis Skučas of Darnestown,
Maryland, who has two children with special
needs. Both are now teenagers, and while one
will be able to live independently, the other
will need care for life.

“You can make changes, revisit as things
develop. Don’t get overwhelmed and put it
off—just get something down on paper,” she
says. “There are also many parts to planning:
wills, trusts, guardianship, SSI (supplementary
When planning for a child with a disability,
parents first need to decide when to start
putting aside money. Matthew Bogin, an
attorney at Bogin Law Firm in Chevy Chase
who specializes in special needs trusts, estate
planning and guardianships, suggests that
you begin saving money as soon as possible.

“If you’re going to consider life insurance
as part of the plan, premiums are only going
to get higher as you age. Plus, people develop
conditions, so the premiums will be even
worse,” Bogin says. Therefore, the younger
and healthier parents are, the better value
they will get on a life insurance plan.

Bogin quotes Albert Einstein’s Rule of
72—the formula popularly used to estimate
the number of years required to double
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What to expect at your meeting
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security income). Evaluate each option and
think through each one.”
When speaking with parents, Marsili
advises them to think about their own future
and retirement first. Second, she reminds
parents that they need to know about a variety
of public benefit programs for which their
(adult) children may be eligible. Knowing
these benefits can considerably lighten the
financial burden on the parents.

“Such programs may provide rental and
energy assistance, long-term care insurance
to cover, for example, in-home care, assistive
technology, job supports, etc. [and] funds one
may use toward room and board [and] health
care coverage,” Marsili says. n
When meeting with a lawyer or a financial planner,
here are a few of the questions that parents need to be
prepared to answer:
• Will my child’s grandparents or extended family be involved in
decision making?
• What role will siblings play in my child’s future?
• Should I leave more money to the child with a disability or the
neurotypical child?
• Will my child need long-term care in a facility, and how much will
that care cost?
• What government assistance does my child qualify for now and in
the future?
Answering these questions may require discussions with the child’s
extended family and medical specialists as well as research into
government (both federal and state) assistance programs.

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