Advocates for the Mentally Ill Criticize Illinois Nursing Homes, Housing Options

Advocates for the mentally ill say that mixing felons, mentally ill people,
the elderly and disabled people at nursing homes in Illinois doesn’t help serve
any of those groups. Recent Chicago Tribune stories also have reported that
some residents have been attacked, raped and murdered in nursing homes. As a
result, Illinois Gov. Pat Quinn launched a Nursing Home Safety Task Force
to expand housing options for the mentally ill.

Besides the Nursing Home Safety Task Force’s hosting a series of public hearings
to get discussions going, Illinois state senators held a hearing in Chicago
to consider ways to improve safety at Illinois nursing homes, where a high number
of ex-felons with mental illness have led to reports of assaults, rape and murder.

As for whether one can find reliable, secure, affordable housing for the mentally
ill in Illinois, Barry Taylor said, “It’s virtually impossible. There is
some out there, but a very small percentage of people have that type of community
support” and “Illinois knows how to do it, but what they need to do
is just provide more funding” to help the mentally ill succeed. Taylor
is legal advocacy director for Equip for Equality,
which aims to advance the human and civil rights of children and adults with
physical and mental disabilities in Illinois.

Advocates for the mentally ill argue that the state should stop relying so
heavily on nursing homes to house the mentally ill. They are pushing for changes
on how Illinois handles psychiatric patients and contend that the mentally ill
could be treated more cheaply and effectively elsewhere.

Nursing Home Safety Task Force Chairman Michael Gelder, who also is senior
adviser of health policy, said at the task force’s last public hearing that
he’ll be looking for both short-term and long-term solutions, and he said that,
hopefully, some of them will be implemented before the task force turns in a
report to the governor by January 31. The task force will examine existing policies
and procedures, improve coordination and communication among state agencies,
alternatives to institutional placement and work with nursing homes to ensure
residents’ safety.

Illinois agencies participating on the task force include the following: Department
of Public Health, Department of Healthcare and Family Services, Department on
Aging, Department of Corrections, Department of Veterans’ Affairs, Housing Development
Authority, Department of Human Services and the Illinois State Police. The group
also is consulting with outside experts, advocates and industry groups.

Illinois depends more than any other state does on nursing homes to house psychiatric
patients. “People with disabilities have been historically segregated away
from the general public,” and that is a form of discrimination, Taylor
said.

He said, “Illinois unfortunately has relied upon a more segregated type
of approach than most other states and has a system right now of putting people
with mental illness either in general nursing homes or in these facilities called
IMDs [Institutions for Mental Diseases], which are basically nursing homes where
the primary diagnosis is 50 percent or more of the residents have mental illness,
and in Illinois it’s pretty much 100 percent.”

An estimated 5,000 people with psychiatric disabilities live in IMDs in Illinois
at an annual cost of more than $160 million, according to Equip for Equality.
Although IMDs tend to place restrictions on residents and their activities,
Taylor said, “Most states realize that integrating people into the community
and providing the support they need is a much better service system.” Supportive
housing offers the mentally ill services they need as they work and live in
their own communities.

Beginning in the late 1960s, the state began releasing thousands of people
with mental illnesses from psychiatric institutions, but the state didn’t create
and develop adequate community housing and services, advocates for the mentally
ill say. Then, in the 1970s and 1980s, nursing home operators opened up IMDs,
and now people released from psychiatric wards in hospitals often wind up in
IMDs.

One problem with IMDs in Illinois is that they are 100 percent state funded
and get no federal Medicaid matching funding, Taylor said. However, he said
that if the state were to create more community housing options for the mentally
ill, they might be able to get federal funding and, therefore, become more fiscally
responsible. Equip for Equality estimates that the state could save more than
$57 million by transitioning 2,000 residents to the community during the next
five years.

A lawsuit challenges Illinois’s housing the mentally ill in IMDs. The lawsuit
was submitted by Equip for Equality, the American Civil Liberties Union of Illinois,
Judge David L. Bazelon Center for Mental Health, Access Living and Kirkland
& Ellis, LLP. In the lawsuit, Williams v. Quinn, which previously was Williams
v. Blagojevich, four people with mental illnesses, who live in Illinois IMDs,
have filed against the state of Illinois a class-action lawsuit on their behalf
and on behalf of mentally ill people who live in IMDs and who could live in
the community with appropriate support and services. A settlement conference
is scheduled for November 24.

The lawsuit states that the IMDs violate the Americans with Disabilities Act
and discriminate against the mentally ill by not providing
“services in the most integrated setting appropriate to their needs.”
They contend that IMDs “are designed to warehouse – often for private profit
– large numbers of people with mental illness in a segregated setting.”
The lawsuit calls for the state to promptly provide eligible people with “appropriate
services sufficient to allow them to live in the most integrated setting appropriate
to their needs.”

In addition, the lawsuit states that “IMDs do not prepare residents to
live independently and deny residents privacy and control over their lives.”
It also states that IMDs “provide little or no rehabilitative treatment
designed to promote recovery, independence and integration into the community.”

The mentally ill need more individualized service and should not be forced
to live via a one-size-fits-all “cookie-cutter model” for everyone,
Taylor said. Providing individualized service also would be more fiscally responsible,
he said.

Although Illinois relies more heavily on nursing homes to house the mentally
ill than other states do, it isn’t the only one challenged with finding reliable
housing for them.

“New York has these large, what they call adult homes that are similar
to our IMDs, and they have a similar lawsuit that just got resolved in their
favor – in favor of people with disabilities,” and calls for the state
to provide community service housing programs for the mentally ill, Taylor said.
Taylor said he hopes that the New York ruling will encourage Illinois to do
the same thing and rule in favor of the mentally ill.

New York Gov. David A. Paterson announced that the State of New York has submitted
a plan that would offer supported housing to people with mental illness who
currently live in certain adult homes in New York City.

In the New York lawsuit, the judge decided that people with mental illness
who live in adult homes are not sufficiently integrated into the community and
that that violates the Americans with Disabilities Act as interpreted by the
Supreme Court’s 1999 Olmstead v. L.C. decision, which stated that that unjustified
institutionalization and isolation stigmatizes people with disabilities. Also,
the judge stated that an integrated setting is a setting that enables individuals
with disabilities to interact with nondisabled persons to the fullest extent
possible, and the judge ordered the state to submit a remedy.

Back in Illinois, Barbara McGoldrick, who talked at the last task force hearing,
is the mother of a 47-year-old son who has suffered from mental illness. After
being unable to find appropriate housing for her son several years ago in Chicago,
she moved him to Minnesota. Although her son eventually came back home to Illinois
to live in a home with three other men who used to live in nursing homes, McGoldrick
said that successfully transitioning from a nursing home to an apartment is
difficult for the mentally ill. She said that one housing opportunity, though,
is to get a voucher to live in an apartment via the Permanent Supportive Housing
program, which provides funding for the production of affordable rental housing
with accompanying supportive services.

“Illinois has fallen short in providing community-based housing to those
people who were moved out of psychiatric institutions,” McGoldrick said.
“This failure to keep pace with the need, combined with the continual lack
of funding year after year thereafter, has left our mentally ill circling between
hospitals, nursing homes, homeless shelters, or worse, wandering the streets
or trapped in our jails. Nursing homes have become dumping grounds for the state
to warehouse young and middle-aged persons with mental illness.”

Meanwhile, McGoldrick said, “People who are ex-felons with psychiatric
problems are now being admitted to nursing homes. We are hearing over and over
of deplorable conditions, terrifying incidents, shameful cover-ups, shocking
security breaches and negligence and false reporting on background checks.”

Illinois Sen. Heather Steans (D-Chicago) represents a North Side district in
Chicago with a high concentration of mentally ill nursing home residents. Talking
about the residents, Steans said, “I am concerned that they are not always
receiving quality care. We are placing patients with mental illnesses into nursing
homes in large numbers unlike anywhere else in the country. Many – not all –
of the patients could be and would prefer to be treated in community-based settings.”

When state senators met in a recent hearing, they said they would try to introduce
reform legislation by February to end mixing ex-felons with the elderly, disabled
and mentally ill. Suggestions included having more home-based and community-based
service options for the mentally ill.

Sources for funding to house the mentally ill should be shifted, Steans said.
“Currently nearly 60 percent of resources for people with severe mental
illness in Illinois are spent on institutional care,” she said. “We
need to move resources that care for these patients to community-based treatment
options. This must be done with planning to ensure patients have high quality
places to go.”

In the immediate time, though, Steans said, “I am encouraged by the task
force the governor has convened under the leadership of Michael Gelder. I trust
the task force will provide recommendation on how to better serve folks with
mental illnesses and keep our nursing homes safe.”