By Chris Kaergard of the Journal Star
Posted Dec. 18, 2014 @ 9:09 pm
PEORIA — Parents of children with disabilities could soon have some help
from the U.S. tax code in setting aside savings for medical and living
expenses for their children.
A measure passed by Congress earlier this month would allow families to
open accounts similar to 529 savings plans for college-bound kids, allowing
them to make tax-deductible contributions each year to ensure care for their
loved ones in future years. Parents throughout central Illinois expressed their
support for the measure at a news conference held Thursday by U.S. Rep.
Aaron Schock, R-Peoria, one of the bill’s sponsors.
“While there are many incredible joys to raising a child with a disability, there
are also significant daily challenges that we face — and while those challenges
weigh heavily on my mind each day, it’s the future that often keeps me awake
at night,” said Holly Roos of Canton, whose two children have Fragile X
She said current laws, which limit the amount people with disabilities who can
still perform some work can earn without losing access to federal aid, are
“completely unacceptable” and that existing policy “reduces a child born with a
disability to a lifetime of poverty and dependence.”
The Achieving a Better Life Experience Act, which awaits signature from
President Barack Obama, allows for up to $14,000 of tax-deductible
contributions a year from families, and the account can grow to $100,000.
Both numbers are indexed to inflation for future years.
“It meets a need for families that are wondering and worried that their loved
one may not be able to take care of themselves when they’re not around to
do it for them, but also it empowers individuals,” Schock said. “It allows people
who might be working a job but who don’t make enough to take care of some
of those living expenses … to be able to save for some of their unpredictable
medical expenses, or their unpredictable living expenses.”
Mary Tucker, whose son Alex has Down syndrome, noted that her son was
able to work and does so for 20 hours a week to develop life skills and foster
But because of those wages, he’s disqualified from receiving some benefits
he’d otherwise be eligible for. Such a savings account would be a benefit to
“I don’t want to live in poverty,” Alex Tucker said at the news conference. “I
want to be able to save for my own future.”
The need is critical because those with some disabilities — including Fragile X,
Down syndrome and autism — may outlive their parents who act as caregivers.
Charlotte Cronin, whose 29-year-old son Daniel lives in a Peoria area group
home, cited statistics showing a growing number of the 22,000 or so people
with disabilities in Illinois on the waiting list for state assistance who live with
aging caregivers — some 1,500 of them in the care of people older than age
Steve Thompson, CEO of Easter Seals of Central Illinois, said that there are
already other methods for parents to save, such as setting up a special needs
trust account, but those tend to require more arrangements and work with
advisers in a way that can seem overly complicated to many people.
Under the bill, which passed by massive bipartisan majorities, each state
must establish its own savings program. Schock said that he would urge
incoming Gov. Bruce Rauner to make that a priority during a meeting Friday.
Chris Kaergard can be reached at firstname.lastname@example.org or 686-3135.
Follow him on Twitter @ChrisKaergard
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423