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