Arc Action Alert

The Senate has given us a tremendous opportunity to fund disability and human
services. Last week, the Senate passed Senate Bill 2046. Included in this bill are
disability services, grants, respite care, early intervention and more.

This bill is now in the House of Representatives and we need the House to pass
SB 2046.

We need all House members, Republicans and Democrats, to vote for this
important legislation.

ACTION: Meet with your House member. They are in their local offices.
Ask them to vote for and become a co-sponsor of Senate Bill 2046.

Commentary from the Daily Herald follows.

Tony

During Illinois’ budget crisis in November 2008, the early intervention
therapists who help children cope with all sorts of issues hadn’t been paid for
nearly two months.

“People need to hear how the state is neglecting providers that service children
with special needs. This is so important,” Algonquin physical therapist Nicole
Molinaro told me then, adding that she couldn’t imagine how the situation could
get any worse. She can now.

Owed thousands of dollars by a state that hasn’t coughed up paychecks for
them since the middle of June, Molinaro and occupational therapist Jenny Vogt
of Cary say the state’s refusal to fund early intervention will cause even more
hardships for their clients — babies and toddlers younger than 3.

“Neither of these kids, without therapy, would be where they are,” says Molinaro
as she and Vogt work with 18-month-old Audrey and Olivia Queen on the floor
in the girls’ home in Cary. Nearly dying after being born a couple of months early,
the twins spent months in the neonatal intensive care unit, unable to do the
things typical babies do. Now they are catching up,

“It’s unbelievable,” grandma Melanie Collins says as she watches a grinning
Audrey stand on her own and take a step toward a toy that Molinaro places a
tempting two steps away. “She wasn’t crawling. She wasn’t doing much at all, and
all of a sudden — whoo!”

With Vogt’s help, a jabbering Olivia, ahead of her sister verbally but behind in
motor skills, crawls toward the toy. Then both girls delight in shoving plastic balls
through holes.

Like a wet blanket about to be thrown over this joyous scene, the contents of a
paper in Vogt’s hand threaten the room’s positive vibes.

“Very sadly, something I have to give you is my 30-day notice,” Vogt says,
handing over a letter that explains how, without funding, “my authorization to
work with your child may no longer be valid and I will be unable to continue
providing services for your family as of October 1.”

It’s a letter being received by parents of 20,000 children up to age 3 across the
state.

“My days are filled with treating patients and fielding numerous phone calls from
distraught parents,” emails physical therapist Elizabeth Pondel Petropoulos,
president of On Small Feet, a pediatric physical therapy service in Elgin. “In the
end, this situation is not about me, or other providers. … This is about the
children who are losing services at a vital time in their development.”

Pointing the finger at Democratic legislators, Republican Gov. Bruce Rauner
says, “We can’t be compassionate to help the most vulnerable if we’re not
competitive.” Democrats blame Rauner for the impasse. The only thing on which
they agree is that children are caught in the middle.

Still finding it difficult to believe that the governor and legislators won’t find a way
to continue funding this program for the state’s most vulnerable children, parents
Matt, 34, and Heather Queen, 33, say they haven’t even explored other options
for their daughters.

The mom says the girls, who couldn’t even hold their own bottles at 9 months,
continue to make progress because of the work by Molinaro, Vogt and a speech
therapist.

“They are not glorified baby-sitters. They are specialists. They know exactly what
they are doing,” says Heather Queen, calling her daughters’ improvement a
“miracle.”

Sitting on the floor and “playing” with the toddlers is work. Sometimes the girls get
fussy and cry because they don’t want to use their legs or reach for items.

“Playing is their occupation,” Vogt says. “This is the job of a child. They have to
feed themselves. They have to play. They have to use their hands.”

Learning to crawl and walk is part of these girls’ educational process.

“If you can’t move, you can’t explore, and your parents never tell you ‘no,'”
Molinaro says.

A life-threatening fluid issue forced the girls to be born early on St. Patrick’s Day
2014 at St. Alexius Medical Center in Hoffman Estates. Audrey weighed 3
pounds, 7 ounces, and Olivia weighed an ounce more than 4 pounds.

Both girls eventually were transferred to the Ann & Robert H. Lurie Children’s
Hospital of Chicago.

Olivia was on a ventilator, endured two surgeries and went through 26 chest
tubes and five cranial tubes. Audrey was flat on her back for her first seven
months.

“I’ve seen them since last November, and they’ve come a long way,” Molinaro
says. “She (Audrey) didn’t even move her arms against gravity.”

A former labor-and-delivery nurse who now works at Northwest Women’s
Consultants in Arlington Heights, Heather Queen says that she’s confident the
$72-an-hour therapy her girls get now will ensure that they will be ready for
school and won’t need more expensive special-education programs and aides.

Heather Queen’s mother, a longtime kindergarten teacher in Barrington schools,
says the early intervention program, which began in 1986 and was upheld in a
class-action suit a decade later, saves taxpayers money.

“I could tell a huge difference between children who went through the program
and those who didn’t,” Collins says.

A mother of four children ages 5 through 12, Vogt, 38, sees the results at her
children’s school. “There are three of my graduates (children who received early
intervention therapy) in regular-education kindergarten,” Vogt says,

“I don’t really cry that often,” says Molinaro, 39, as she talks about how she did
get emotional after encountering one of her graduates playing hockey at the
rink where some of her five kids, who are now between the ages of 6 and 13,
played hockey.

The state owes Vogt $9,000 and Molinaro $7,000. Meanwhile, parents such as
the Queens continue to pay the state a graduated monthly fee for the program.

“What’s the state do with my money to pay their fees?” Heather Queen wonders.

She says her twins are making remarkable progress because of our state’s
early intervention program. Our state, meanwhile, is making no progress on
paying for the program. Supporters of early intervention are planning to rally at
10 a.m. Thursday, Sept. 24, at the Capitol in Springfield.

“It’s awful,” Vogt says. “The fact that these politicians are using babies with
disabilities as pawns in disgusting.”

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org