With 22,800 children and adults with IDD on the PUNS Waiting List stories like this are
always problematic. For the past three years we have seen adults move off the waiting
list because of the Ligas Consent Decree. In fact, over 2,000 have moved off the waiting
list. However, last week, Director Casey and his staff reviewed the proposed budget for
the Division of Developmental Disabilities with The Arc. I asked the Director about moving
people off the waiting list this spring? He indicated it was uncertain if there would be
another draw of 500 people this April. I then asked him then about another draw of 500
people in the new fiscal year beginning July 1st? The Director also indicated that it was
uncertain whether there would be a draw from the waiting list in Fiscal Year 2016. I am
bringing this to the attention of the Ligas Court Monitor. Times certainly are changing.

Story from the Chicago Tribune below.

Meeting with housing advocates today.


Autistic son turns 21 and family begins new, scary journey

By Lisa Black
Chicago Tribune Reporter

Cody Yearian just turned 21, and to celebrate, he enjoyed his favorite food, French fries,
and a ticket to Disney on Ice.

His parents greeted his milestone birthday with joy — and apprehension — as they
prepare for his return home.

As a young man with autism, Cody will soon no longer qualify for federally mandated
educational services. The day before he turns 22, he will have to leave the residential
school outside Cleveland where he has received around-the-clock supervision and
coaching for the past five years.[Finding the gift in autism]
Finding the gift in autismLike other parents of adults with disabilities, the Yearians hope
to find a living and work arrangement that gives Cody purpose and as much
independence as possible. This is not an easy task, especially in Illinois, which
traditionally ranks near the bottom, nationally, in providing community support for people
with disabilities.

Cody will require 24-hour supervision and a day program. He might not live near his
family, depending on what services are best for him.

“When Cody turned 21, I’ll admit I felt scared,” said his mom, Kathi Yearian, whose
schedule is filled with appointments and interviews with service providers. She and other
parents of children with special needs refer to this time as “the day the bus stops coming.”

“I felt like someone had set a clock — that is now ticking loudly,” she said.lRelated [Zoo
experience unlocks new life for girl with disabilities]NEWS
Zoo experience unlocks new life for girl with disabilitiesSEE ALL RELATED
8Kathi has been a dear friend for nearly 50 years, and our children have grown up
alongside each other. While my son who is Cody’s age was applying for his driver’s license
or attending prom, Cody was learning to improve his social skills or to make his bed.

Those moments have been bittersweet. Kathi does not seek sympathy, but sometimes
wishes for more understanding from others that people on the autism spectrum vary
widely in personality, skills and challenges. They simply need extra help and patience in
finding a place to fit in.

Cody attended north suburban schools until he reached high school, when his occasional
behavioral outbursts became unmanageable. He couldn’t handle transitions such as
changing classrooms, but could read and write at an elementary level, communicate with
others and understand jokes. He has thrived at the Monarch Center for Autism in Shaker
Heights, Ohio, where he has begun trying out jobs in the community. Our
daughter with Autism turned 22 two days ago. We too went through a long period with
‘the ticking clock’ without a whole lot in our control. We had done all the legwork; became
her legal guardian at 18; signed her up for Social Security; got her name on the state
PUNS list and -…
2This is the same school attended by Ben Royko, grandson of the late Tribune columnist
Mike Royko, and the subject of a book by his father called “The Chronicles of Ben —
Adventures in Autism.”

The families know each other — Cody and Ben are about the same age — and they find
some comfort being able to share experiences with others who can relate to their
frustrations and successes, however small.

For instance, Cody since a young age has been terrified by Koosh balls, those colorful
toys with rubbery tentacles. Once he fled a toy store, screaming, after an unwitting clerk
tossed him one of the quivering blobs. Today, if entering a store that may have a Koosh
ball, Cody has learned to ask an employee where they are located. He then avoids that

As a child, he was often overwhelmed by loud noises and sensations that we take for
granted. Yet today he loves to ride roller coasters — the scarier, the better.

He carries a backpack filled with his favorite word puzzle books and a dictionary worn
ragged from use. When focused on a Jumble, he identifies words that he’s never seen
before and wouldn’t know how to use in a conversation.

These are just a few of the ways his mind works.

He is endearing and mischievous. One year, when he was about 5, Cody grew attached
to the cleaning crew who helped out at his family’s house. That was the year I bought him
a cleaning bucket, embellished with his name, for his birthday.

Cody followed the crew’s leader, Andre, around with a miniature toy vacuum. Today, the
Yearians make sure to coordinate Cody’s home visits so that he and Andre can connect.

Last Halloween, Cody dressed as Donald Trump for Halloween. He can be seen in a
photograph clutching his “Where’s Waldo?” book as he barked, “You’re fired!” at the
school staff.

He has a long-standing crush on Minnie Mouse, and shyly posed for a picture with her
at Disney World.

While Cody can also be difficult, Kathi wants people to know that having a child with a
disability is “not the end of the world.”

Would she take it away, if she could?

Definitely. But her son, she says, is not defined by autism.

“He may not understand his disability, or even that he has one,” Kathi said. “That in
itself is a blessing. Who is to say that he is not complete because he’s not on the same
path as the majority? He’s happier than most people I know, he lives in the moment. He
never worries about what others think of him, or agonizes over world issues.”

She worries about his future, though, and at one point considered moving out of state to
accommodate Cody’s needs. The United Cerebral Palsy’s 2014 report, “The Case for
Inclusion”, ranks Illinois 46th in how it uses its Medicaid spending to promote
independence for people with intellectual and developmental disabilities.

It’s helpful that Cody and his family share a good sense of humor.

My friend is tickled when her son calls her. “Hello?” she says, knowing Cody is on the
other end.

“What,” a gruff voice responds.

“Cody, you called me.”

He breathes deeply.

“I know,” he says, and then laughs.

He begins his new journey soon. And so does his family.


Twitter @LisaBChiTribCopyright © 2015, Chicago Tribune

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)