Heading to Pontiac today to meet with advocates in the Going Home Campaign.
Tomorrow is a joint Senate/House Hearing on the 1115 Waiver, 10:30, Bilandic Building,
160 N. LaSalle, Room C 600, Sixth Floor, Chicago.
Great story on rebalancing from the Southern Illinoisan in Carbondale.
Talks about closing Murrary Developmental Center at a standstill
MOLLY PARKER THE SOUTHERN
It’s been 15 years since the U.S. Supreme Court ruled in favor of two women with
intellectual disability and mental illness who argued they were unnecessarily kept in a
state-run institution in Georgia in violation of the Americans with Disabilities Act.
The lawsuit brought by those women, Lois Curtis and Elaine Wilson, has changed the
conversation about the appropriateness of institutions as living settings for people with
disabilities.
For years, states and advocacy groups have grappled with the best way to answer the
mandate of what’s known as the 1999 Supreme Court Olmstead decision. This has
resulted in lawsuits, poorly planned facility closures, and multi-million dollar transition
initiatives that have worked with varying degrees of success in reaching the overall
goal of providing more community living options for people with disabilities and
downsizing the use of expensive facilities.
That debate continues to play out across Illinois, and in the region at Centralia’s Murray
Developmental Center, an institution for people with intellectual and developmental
disabilities that Gov. Pat Quinn has targeted for closure under a so-called Rebalancing
Initiative.
Quinn’s opponent in the Nov. 4 election, Republican gubernatorial candidate Bruce
Rauner, says he would keep the Murray Developmental Center open, saying to close
it would be “irresponsible” unless the state made “absolutely certain” that there is a better
option in the community.
A parents’ group, the Illinois League of Advocates for the Developmentally Disabled,
sued the state over the proposed closure, but a judge in July said parents of residents
did not prove they would suffer “irreparable harm” if Murray closes.
That group recently filed a notice of appeal, and the facility’s closure is on hold.
After that July court ruling, a spokeswoman for the Department of Human Services, which
operates the facility, said more information would be available in the coming weeks after
talks with parents and guardians about plans for closure.
Almost 10 weeks later, on Friday, DHS spokeswoman Januari Smith had the same
comment — that more information would be available in the coming weeks or months.
Asked if there would be action taken this year to shutter the facility, Smith said, “I don’t
know. I really don’t know.”
“We haven’t set an absolute closure date or anything like that and it’s really not something
we’re looking at right now.”
She said it’s been difficult to communicate with parents as many “still don’t want to talk to
us.”
The issue of downsizing facilities is an emotionally charged debate with no easy answers
that has at its core the state’s most vulnerable residents and their families.
In his 23 years as executive director of The Arc of Illinois, an advocacy organization for
individuals with intellectual and developmental disabilities, Tony Paulauski said he’s
witnessed a sea change in policy, some that has been more successful than others.
But he said Quinn’s 2011 initiative is moving in the right direction “away from dated and
expensive state institutions” and reducing years-long waiting lists for people to receive
Medicaid services in the community. He also praised the planning process behind Quinn’s
2012 closure of the 160-year-old Jacksonville Developmental Center, which was the first
facility to close under the initiative.
But it’s more than about saving money, he said.
People who have been living in institutions for years are finally getting the opportunities
many take for granted, such as choosing where they live and with whom they associate,
he said.
“The change in people’s lives is dramatic and I can’t state that enough,” he said.
Take for instance Michelle Spurlock, a 47-year-old with developmental disabilities who
lives in downstate Wood River.
After her mother died in 1992, she bounced around between various group homes and
family living situations that were less than ideal. Spurlock, who enjoys movies, eating out,
riding the bus and going for walks, said what frustrated her about living in a group home
is that she couldn’t go on a walk without a staff member and the other residents, and she
therefore couldn’t go when she wanted. After a long wait, Spurlock was recently placed
on a Medicaid “waiver” for people with developmental disabilities that provides in-home
supports. She has her own apartment — and she goes for walks when she wants.
“Just like anybody else, we have dreams and hopes just like you do,” she said.
Paulauski said it’s a misnomer that people with severe developmental and intellectual
disabilities can’t thrive in the community with the appropriate supports.
“We know that the people who benefit the most from community living are those people
with the label of having the most severe disability,” he said.
According to at least one study cited by The Arc, Illinois, with seven operating state facilities,
is one of the most institutionalized states in the nation. Around 38 percent of people with
intellectual and developmental disabilities live in houses and apartments with less than six
others; in contrast, 75 percent of people with intellectual and developmental disabilities
nationwide live in community arrangements outside of large institutions, the advocacy group
says.
But some say those institutions are the best option for their loved ones. Rita Winkeler, as
president of Murray Parents Association, is leading the fight against closing Murray
Developmental Center, where her 30-year-old son lives.
She said Mark functions at the level of a 9-month old. “He’s a baby. And functions as a baby,”
she said. As such, she argues he needs around-the-clock nursing care that isn’t available
in the community.
She noted that while the July ruling was hailed as a victory for the state, the judge also
mandated that state leaders offer parents a full range of options, which they testified in
federal court they would do, to include an institutional setting.
As did DHS’s Smith, Winkeler also said communication has broken down since this summer.
“The state has not really talked to us much,” she said. “I called them and I’ve never gotten
any calls back. We’re at a very big standstill.”
Winkeler said she understands the sentiments of the governor and advocacy leaders that
people with disabilities should have the option to live in the community and outside an
institution.
But she also argues that they don’t understand reality, saying, “in a utopian world, that may
work.”
molly.parker@thesouthern.com
618-351-5079
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@www.thearcofil.org
