Moving out of a state institution

From the Chicago Tribune, an interesting article about an adult
woman who recently moved from Howe into a group home. It's this
kind of story that makes me wonder how sibs can help change the system in IL.  Tara and I recently attended a meeting about changing the whole system in IL.   Here's the article:

A home that heals
After years in a state institution, a woman with autism finds a
better life and independence in a small group home.

By Joel Hood and Bonnie Miller Rubin | Chicago Tribune reporters
4:35 PM CDT, August 30, 2008
Deep into middle age, Helen Jarski is finally home.

She lives in a suburban ranch house on a quiet, tree-lined street
southwest of Chicago. When visitors stop by, the 48-year-old eagerly
shows off the kitchen where she makes snacks, the cozy bedroom she
keeps remarkably clean and the living room where she sometimes
watches her favorite movies: "Flipper" and "Lassie."

It is a humble home, to be sure. But for Helen and thousands of
other disabled adults across Illinois, group homes such as this are
a profound change from the state institutions in which they used to
live.

Advocates for disabled adults and numerous studies long have praised
group homes for fostering independence and consistency—ingredients
considered vital for meaningful and productive lives. During the
last 30 years, states have responded by funneling millions of
dollars into programs to lift disabled adults out of institutions
and into small, privately run group homes.

Change has been widespread—except in Illinois, which spends less of
its money on small group homes and more on public institutions than
any state in the nation. Illinois ranks at or near the bottom in per
capita spending in almost every category when it comes to caring for
disabled adults—a record that critics call "shameful"
and "embarrassing."

And in recent weeks, millions more that would have helped people
move from institutions has been sliced from the state budget.

"These cuts are draconian," said Tony Paulauski, director of the Arc
of Illinois, an advocacy organization for the developmentally
disabled. "This is the worst situation I've seen in 25 years."

Helen lived more than half her life in a state facility. Though
there were good times, her family said, impersonal care and ever-
changing staff were growing sources of frustration and worry in the
last five years. As arguments swirl in Illinois over the best way to
care for these folks, the Jarskis' story mirrors the struggles of so
many who already have left institutions and the thousands more
wanting to get out."We absolutely are concerned and working very
hard to improve the quality of care [at Howe Developmental Center],"
said Lilia Teninty, director of the Department of Human Services'
developmental disability division. "The majority of the people we've
transitioned out of state care have come from Howe. But, I think,
not everyone has the same experience there."

•••

Helen is autistic. She is graying around the temples, but has the IQ
of a preschooler. For the Jarskis, Howe solved the problem of what
to do with their daughter long before the mysterious disability had
the celebrity clout it does today.

"No one even knew about autism," said Rose Jarski, 69, Helen's
mother and relentless advocate. "They just told me she was brain
damaged . . . that I should institutionalize her and forget about
her. But I knew she could learn."

That was in the early 1960s. With no Internet, but armed with
unconditional love, she navigated Helen's world, unearthing special
schools, therapies and clinicians.

In 1966, Rose and Frank Jarski, a printer, moved from their
Southwest Side bungalow to Burbank, an inner-ring suburb that
offered better services. And when those interventions stopped
meeting her needs, Rose learned to drive so Helen could attend a
school in Oak Park, where they eventually settled. And when that
placement unraveled, it was on to another school in Palos Hills,
where the family has lived since.

"Honestly, I don't know what I would have done if Helen hadn't been
in my life. I couldn't drive. I was shy and quiet . . . but I
learned to fight."

Despite everyone's best efforts, Helen slipped into a world beyond
their reach. It wasn't until age 18, when self-abusive behaviors
emerged—hitting herself on the face, tearing her clothes—that
Helen's mother realized she could no longer keep her at home.

Rose again channeled her energy into making life better for Helen.
Less than a half-hour away, Howe had opened in Tinley Park. The
facility, with its low brick buildings and campuslike atmosphere,
was a vast improvement over the fortresses of Dixon and Lincoln,
institutions that made parents shudder.

Beginning in the late 1970s, Howe provided Helen with exactly what
she needed: structure and a sense of purpose. Most days were spent
doing menial jobs such as folding napkins or packing toilet paper
for pennies an hour, Rose said. While she hadn't progressed
cognitively or emotionally, she seemed happy.

Then things changed: the haphazard care, the days spent on a bench
without outings or activities, the revolving door of staff. In one
of her final years at Howe, Helen had 55 caregivers in one month—a
hardship for anyone, but particularly for a population that thrives
on consistency.

"Some staff didn't even know her name," Rose said.

One Sunday night, after Helen visited her parents' home, Rose drove
her back to Howe only to find everyone had called in sick and nobody
was around to let her in.

•••

Critics calling for the closings of state institutions have
identified what they consider the poster child for stubborn
ineptitude when it comes to these facilities: Howe.

Watchdog groups have compiled a list of at least 21 deaths there
since 2005 they say are directly attributable to substandard care.
The center recently got its third director in as many years. Last
year, the neglect forced the federal government to rescind Howe's
Medicaid certification, stripping the center of nearly $30 million
and triggering an investigation by the U.S. Department of Justice.

But rather than close Howe and find alternatives for its 320
residents, Illinois became its sole provider. The state spends $60
million a year—or roughly $169,000 per resident—to keep Howe open.

"Imagine how that money could be used out in the community," said
Zena Naiditch, president of the non-profit watchdog Equip for
Equality.

How did the state get here? Experts point to lack of leadership,
mixed messages from parents of residents and the state's history of
favoring unions and job-rich institutions.

"We're in this mess because we hung on to institutions more than
anyone else," said Art Dykstra, who once ran Howe and now is at the
helm of Trinity Services, the agency that runs Helen's new home.

Since 2005, the state has moved a couple of hundred people from
institutions to group homes. Teninty vowed to keep up the momentum.

"We still have a lot of work to do in expanding capacity in the
community," she said. "There are limited resources and unlimited
needs."

•••

After five years on a waiting list, Helen is one of the lucky ones,
ending up in April in this New Lenox ranch on 2 bucolic acres. Her
room is decorated with family photos and balloons from a recent
birthday. More than physical surroundings, it is the care that has
changed.

Said Frank: "Her sentences have become more conversational," which
he and the staff attribute to the new environment—proof that even
now, small triumphs are possible.

Rose no longer worries if she is unable to pick up her daughter
every Friday afternoon. Helen is no longer agitated when her mother
drops her off, and sometimes forgets even to say goodbye as she
exits the car.