Barack Aides Seen as Foes of Community Care
By Mike Ervin
President Barack Obama's inner Washington circle is full
of Chicagoans. Two in particular -- Arne Duncan and David Axelrod -- sounded
alarm bells among Chicago disability activists when their appointments were
recently announced.
New Secretary of Education Arne Duncan was the former head
of the Chicago Public Schools. Catalyst Chicago, an independent
newsmagazine that reports on education in Chicago, characterized Duncan’s
special education record at CPS as “dismal.” A few days after his
appointment as secretary, Access Living, Chicago’s Center for Independent
Living, issued a press release criticizing him for cutting $12 million from the
CPS special education budget and for other moves that showed disregard for
students with disabilities.
Senior advisor David Axelrod was the brains behind
Obama’s presidential campaign.
Axelrod, whose 27-year-old daughter Lauren has epilepsy,
has said he has deep empathy for people living with disabilities. Lauren
Axelrod is a longtime resident of Misericordia, a segregated community for 550
people with developmental disabilities run by the Roman Catholic Church. To
local disability rights activists, Misericordia is a symbol of the antiquated
1950s institutional-charity model of long-term-care delivery.
Axelrod has expressed deep affection for Misericordia and
has helped raise lots of money for it. Disability rights activists wonder how
the advice he gives the president on long-term care will affect efforts to
shift money away from institutions and into community settings.
Catalyst Chicago wrote, “One area where there
was no improvement or reform under Duncan was special education.”
According to the publication, half of high school students with learning
disabilities drop out and fewer than 25 percent of CPS elementary-school pupils
(and less than 10 percent of those in high school) receiving special education
services met state standards in 2007.
Rod Estvan, Access Living’s education outreach
coordinator, said of Duncan, “The needs of kids with disabilities just
don’t click with him.” The Access Living statement, which Estvan
helped write, said that the $12 million in special education cut was originally
proposed to be $26 million.
“If the cuts had been implemented, an estimated 200
special education teachers and 750 special education aides would have been laid
off,” the statement said. The amount was cut in half in the face of
protests, but Estvan said there is still a subsequent shortage of aides.
“A lot of parents are bitter about it.”
The statement credits CPS for budgeting $23 million
annually from fiscal year 2009 through fiscal year 2012 to Capital Project
Funds for Americans with Disabilities Act projects. “These projects will
make numerous previously non-accessible schools available for students with
disabilities and will allow some students, who would have been bused long
distances, to attend schools in their own communities,” the statement
said.
Estvan said a similar agreement negotiated with
Duncan’s predecessor disappeared from the budget when he took over. Though
a new agreement was eventually reached, Estvan said valuable opportunities to
make school infrastructure more accessible were lost in the interim.
Since 1997, CPS has been operating under a consent decree
born of a special education lawsuit requiring it to make greater efforts to
place disabled students in the least restrictive environment. When a federal
judge extended that decree through 2010, Duncan unsuccessfully tried to appeal
that decision. Estvan said that was another example of Duncan’s
“hostility” toward special ed.
From the outside, Misericordia looks like a pristine,
Dickensian village nestled on Chicago’s far north. According to Kevin
Connelly, Misericordia development officer, residents range in age from infants
to about age 62, and the most independent residents function at the
intellectual level of a 14-year-old. “More often than not when they come
here, it means they will be here for their entire lives,” he said.
Some adult residents work on campus, such as at the
greenhouse, gift shop or restaurant. Some have jobs in the community and some
go to day programs. There are a variety of living situations, but most adults
live in the 12-resident, same-sex houses on campus, Connelly said.
“We want people to make their own decisions to the
extent that they can,” Connelly said. But life at Misericordia comes with
many of the restrictions of institutional life. Connelly said that all those
who visit the residents have to come from a list approved by family or
guardians. He added that some residents are allowed to leave the campus
unattended, but they must always let someone know where they are going and when
they will return,
No residents are married. Lois Gates, assistant executive
director, said that, to her knowledge, none has ever expressed a desire to
marry, but if any did, Misericordia would probably not be an appropriate place
for them to live.
According to Connelly, those who work on campus earn
minimum wage, but because the state deducts most of what they earn from what it
pays Misericordia for their care, most of their pay goes back to Misericordia.
The residents get to keep little of what they earn.
Misericordia’s executive director is Sister Rosemary
Connelly, Kevin’s aunt. Rosemary Connelly is a vocal opponent of attempts
to shift funding away from institutions. In the column she writes for
Misericordia’s quarterly newsletter, that is a common theme.
In one column, she wrote: “When I listen to advocates
who want every person with developmental disabilities, no matter how severe
their disabilities, to live in isolated houses in neighborhoods, I shudder with
fear. What will happen to individuals living in isolated houses when their
physical needs become so demanding that no individual house would be able to
provide appropriate care? Will they be ‘dumped’ in inadequate nursing
homes?
“When the person is so severely disabled – an
adult functioning at a mental age of 12 months to 3 years of age -- will the
four walls of the house become their world? Are individual houses able to
provide the medical, nursing and therapeutic services some persons need?
Legitimate questions which some advocates appear to ignore. I don’t
question the sincerity of these advocates who are very frustrated because of
the lack of funding for smaller residential services. But would it not be more
prudent and realistic to be evaluating services on ‘quality of life’
rather than size?
“Misericordia is classified as a “large
institution” with all the negative connotations that implies. No matter,
big is bad and thus, for some advocates Misericordia is not only bad but a
‘stumbling block’ for them to continue their ‘crusade’ to
eliminate all residential services that are big. We ‘weaken’ their
efforts because anyone who visits us knows that our children and adults are
truly some of the happiest and contented people you would find anywhere. They
are living lives of dignity, respect, challenge and beauty … Let’s
pray for all our government officials that the Lord may touch their hearts and
the weakest among us will be considered as they establish their future
priorities.”
Lawyers representing Misericordia residents and people on
its waiting list have repeatedly tried to intervene in a long-running Olmstead
lawsuit that seeks to create a greater variety of smaller community care
options in Illinois. They argue that such a shift in priorities would take away
their clients’ freedom to choose to live in places like Misericordia. The
judge has repeatedly rebuffed their efforts.
Rosemary Connelly is not shy about courting powerful
politicians. On January 12th, Axelrod was the guest of honor at a $500-a-plate
fund-raising breakfast at Misericordia. The nearly 400 attendees, according to
the Misericordia newsletter, included “a plethora of Illinois elected
officials,” including the attorney general and state treasurer, the
president of the Cook County board and four members of the Chicago city
council.
“Of course,” Rosemary Connelly wrote in her
newsletter column, “I had to use this gathering of many influential people
to share my concerns … some sincere advocates -- on both the national and
state levels -- would like to see communities like Misericordia closed solely
because they are big.” After a tour of Misericordia at the Axelrod event,
Rosemary Connelly wrote, “several state legislators shared that we should
be a model for the entire country.”
Attempts to contact Duncan and Axelrod for his article
were unsuccessful.
Mike Ervin is a member of American Disabled for
Attendant Programs Today, a group that works for the civil rights of people
with disabilities. He is a frequent contributor to Independence Today.
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