Mental illness has taken precious things away from Amanda Guagenti. She's trying to get some of them back.
The symptoms -- depression, extreme anxiety, delusional thoughts -- first appeared while Guagenti was in college roughly a decade ago. They got worse after she graduated and started a life in Nevada with her boyfriend and young son.
By the time she was in her late 20s, Guagenti's illness had taken a staggering toll. It took away her career, broke up her relationship and separated her from her boy.
Guagenti, 30, now lives with her parents in their Arlington Heights home. She still struggles with social anxiety, but with help from therapy and medication, her symptoms have largely stabilized. She's trying to focus on recovery, on reclaiming the lost parts of her life.
"Even though I lost a lot," Guagenti said via email, "I still have a lot of life to live!"
Guagenti hopes to work and be an active mother again, but a more immediate goal is to move into a place of her own.
She would like to find a place close by, a place that's affordable, a place that would provide independence and easy access to needed social services.
But local social service agencies and advocacy groups say that kind of housing -- often referred to as permanent supportive housing -- is rare in the suburbs.
"No, there really isn't anything like that out here, certainly not as much as is needed," said Mitch Bruski, CEO of the Kenneth Young Center, a mental-health services provider based in Elk Grove Village. "So people with mental illness in this area are forced to live with their parents or in nursing homes, or they have to leave their communities to live in the city. Tragically, some of them end up homeless."
A solution would be to build more supportive-housing units in the area. But that's proving to be difficult.
Chicago-based Daveri Development Group, with help from agencies like the North/Northwest Suburban Task Force on Supportive Housing for Individuals with Mental Illness, has submitted three proposals during the past several years for supportive-housing developments in the suburbs -- one in Arlington Heights, one in Mount Prospect and one in Wheeling.
Mount Prospect leaders approved Daveri's plan in November 2011. That project, known as Myers Place, is expected to open at Dempster Street and Busse Road in the spring or summer of 2013.
The other two proposals, after encountering stiff resistance from neighbors, were rejected.
Many critics of those plans said the same basic thing: good concept, bad location.
In Wheeling, for example, residents said the development would worsen already heavy traffic near the proposed site on Hintz Road and could exacerbate flooding issues in the neighborhood.
Supporters, though, think fear and a lingering stigma attached to mental illness were behind residents' objections and the village boards' votes.
Daveri and its partner agencies sued Arlington Heights and Wheeling after their votes, accusing the towns of violating fair-housing laws. The Arlington Heights case came to an end in June, when a federal judge sided with the village and dismissed the lawsuit, saying there was no evidence of bias in the village's decision. The Wheeling suit, filed in September, is still pending.
Guagenti said she hopes the legal battles stop and more towns follow Mount Prospect's lead.
"Living on one's own is an innate desire -- most of us grow up and 'flee the nest,'" she said. "A person ailing from mental illness has the same wishes and desires as everyone else but may need additional support from family and friends. Not providing our own citizens with these kinds of accommodations is doing a disservice to our own community."
State told to change
Daveri's efforts in the Northwest suburbs come at a time of great change in the state's approach to housing for people with mental illness.
In 2005, some residents of state-funded homes called "institutions for mental disease" sued the state, claiming that their placement in those facilities violated the federal Americans With Disabilities Act. The complaint became a class-action lawsuit a year later. IMDs, as the facilities are known, are for-profit nursing homes that the state has historically relied on to house adults with mental illness.
A federal judge ruled in the plaintiffs' favor in 2010. The resulting consent decree gives the state five years to offer independent supportive housing to the roughly 4,300 residents of IMDs across Illinois.
"It's not that everyone has to be moved out of the IMDs," said Mark Heyrman, law professor at the University of Chicago and expert on state mental-health policy. "People who need to be in those facilities can stay. But the consent decree requires that those who can and choose to live independently be given that option."
There are serious financial benefits to such a transition, Heyrman said. He estimated that the state -- that is, Illinois taxpayers -- has spent as much as $30,000 per resident annually to house people in IMDs. That comes to more than $120 million in a year. And IMDs are not eligible for matching federal Medicaid dollars, so the state foots the entire bill.
But once residents are transitioned out of IMDs into community housing, service costs are eligible for matching federal Medicaid dollars, Heyrman said.
"It's really a win-win," he said. "It could immediately cut the taxpayers' burden by half or more."
There are other cost benefits, experts say.
The Chicago-based Heartland Alliance Mid-America Institute on Poverty -- now known as the Social IMPACT Research Center -- released results of a study in 2009 that showed that moving people from nursing homes, mental hospitals and prisons into supportive housing results in long-term savings for taxpayers.
The report tracked 177 people over two years as they moved from institutional care to supportive housing. Researchers found that the transition resulted in a number of cost-saving changes:
• The residents used fewer publicly funded health care services than before.
• They used less expensive types of health care services -- e.g., outpatient vs. inpatient services -- and made fewer trips to emergency rooms.
• They spent significantly less time incarcerated.
The total savings to taxpayers over that time was $854,477, or $4,828 per person studied, the report stated.
"When a person's basic needs are taken care of, other aspects of his or her life stabilize," said Amy Terpstra, associate director of the research center. "Supportive housing gives residents what they need to lead healthier, more self-sufficient and more productive lives, which ends up saving everyone down the line when it comes to things like public aid and health costs."
Joe Novak, a psychologist and director of mental health at Northwest Community Healthcare in Arlington Heights, said supportive housing can play a crucial role in the recovery process for people with mental illness.
"Housing is a huge factor in helping people get back into society," Novak said. "It's a key part of recovery."
Stigma still an issue
Novak said public perceptions of mental illness are often distorted, arising from depictions of mental illness seen in the movies.
"They see the Hollywood version of a schizophrenic or psychotic person, and they think that is mental illness," he said. "But it's much more complicated than that. 'Mental illness' refers to a huge variety of conditions, including depression or anxiety. Studies show that the incidence of violence among the mentally ill is no greater than that of the general population."
Others said that real-life tragedies like the recent shootings in Aurora, Colo., and Newtown, Conn., can strengthen the connection between mental illness and violence in people's minds, even when it's not known precisely to what extent mental illness played a role.
Amanda Guagenti said she's noticed that when people, even friends, find out she has a mental illness, they get uncomfortable and shy away.
"They tend to distance themselves socially from you," she said. "I think people expect you to behave like some barbaric character from an insane asylum of years past or something out of 'One Flew Over the Cuckoo's Nest.'"
Some critics of the Arlington Heights and Wheeling proposals expressed concerns about personal safety during public meetings on those proposals. In Arlington Heights, some pointed out that the proposed site -- on Boeger Road, near the intersection of Arlington Heights and Dundee roads -- sat near Buffalo Grove High School. In Wheeling, some expressed concerns about residents of the development walking local streets and using local parks.
Novak said people who are in an acute mental crisis -- those who are suicidal or could pose a danger to others -- are not the types of people who would be cleared to live in a supportive housing development like the ones Daveri has proposed.
"It's true that some people who are in crisis need to be hospitalized," he said. "And that's just the first step in their care. Their recovery would have to reach a certain point before they could be considered for supportive housing. But mental illness is a continuum, and cases of extreme crisis make up just a small part of it."
Daveri Vice President Jessica Berzac said prospective residents of facilities like Myers Place, the Daveri facility in Mount Prospect, will undergo rigorous screening and background checks. The process will weed out those with felony crimes in their backgrounds and ensure that the residents are mentally and emotionally equipped to live on their own, she said. Prospective residents will also have to meet income requirements.
Berzac thinks unfounded fears about mental illness have driven the local opposition to Daveri's proposals in Arlington Heights and Wheeling.
"There's absolutely a stigma," she said. "And people often hide it by saying, 'That's not the right location.' Well, we've found that for certain people, there never is a 'right' location."
What the critics say
Many critics, though, insist that location is a legitimate concern, and they bristle at the suggestion that their concerns are based on fear.
Jack Siegel, attorney for the village of Arlington Heights, said the village board's rejection of Daveri's plan was "purely a zoning matter." Daveri had asked the village to grant a number of variances in its proposal.
"Arlington Heights has a reputation of being very supportive of such developments, but this particular one just didn't work," Siegel said. "We thought there would be more discussions, but then they sued and accused us of discrimination. A claim that, as the judge ruled, had absolutely no merit."
Wheeling Trustee Dean Argiris, in an interview conducted before Daveri sued that village, strongly denied that fear or prejudice played a role in his board's decision. He said the problem was simple: Daveri chose a bad site.
"It's all about that site," Argiris said. "Nothing else was behind our vote. It was always that site."
Argiris said the parcel Daveri chose is adjacent to a very busy road and is not close to amenities like shopping or transportation -- the kinds of things he'd expect a developer to want.
"I think what was going on is that Daveri found some land that they could get cheap," he said. "There are plenty of sites around that would be better for something like that, and if they came in for one of those, I'd have no problem."
Wheeling residents who opposed Daveri's plan declined to be quoted about their concerns, but many expressed thoughts similar to Argiris'. Some accused Daveri of being inflexible with regard to location.
Berzac said that with any development proposal, Daveri spends a great deal of time and money researching sites before formally submitting a plan to local officials. When preparing for the Arlington Heights proposal, for instance, Daveri researched 60 parcels in the market area before settling on Boeger Road, she said.
"Critics don't realize or acknowledge the extensive site research we do before the opposition comes into play," said during an interview conducted via email. "(They) often suggest parcels that aren't even for sale, (lie) in flood zones, or that are zoned commercial and the municipality has told us they are not interested in residential at that location."
Berzac added that while the Wheeling site might be more remote than certain parcels in Chicago, it still has earned positive responses from potential residents and suburban social service providers.
"I've always found it interesting that our opponents are more concerned for future residents' amenity access that the actual future residents," she said. "It's another way of saying, 'Not next to me.'"
The wait continues
Daveri's court battle with Wheeling is scheduled to proceed in February, when a federal judge will rule on a motion to grant a preliminary injunction requiring Wheeling to approve the proposed 50-unit development, known as Philhaven. In the meantime, Daveri continues to look for additional sites in the Northwest suburbs.
"We're leaving no stone unturned," Berzac said.
The battles over location leave suburban residents who would be interested in supportive housing with nothing to do but wait.
"I hope these problems get resolved, because these types of places would be perfect," said Joe Pfendt, a 55-year-old Countryside resident. Pfendt has battled bipolar disorder since the day a panic attack seized him during his high-school graduation ceremony in 1976.
Pfendt, who controls his symptoms with medication and therapy, said living in Myers Place or a similar development would make it easier for him to enter into long-term friendships.
"That's one of the hardest things about my illness, making friends," he said. "It still makes people uncomfortable, even when it's controlled. At somewhere like Myers Place, everyone would be in a similar situation."
Lou Guagenti, Amanda's father, said he and his wife are ready to take care of their daughter for the rest of their lives if they have to, but he said she's made so much progress that everyone hopes she'll be living on her own soon.
"This isn't Amanda's fault," he said. "She has a brain disorder, a disease. Like diabetes is a disease. And she needs treatment, which she's been getting and responding to. I know that living on her own would be a huge boost for her confidence and her recovery as a whole.
"The thing is, people who oppose this housing don't want mentally ill people living in their communities, but they already do. They're already here! So why deny them a place to live on their own?"