Recent high-profile tragedies, including a school shooting in Newtown, Connecticut that took the lives of 20 children and six adults, have prompted states to reassess their mental health care systems. After almost $2 billion in cuts nationwide, many of them, including Illinois, are finding their support systems for the mentally ill in tatters.
Advocates and providers say cuts to mental health funding in the state have left the system decimated, but they say the implementation of federal health care reform offers hope for those who are unable to access services now.
The economic collapse — and the state budget woes that followed — left legislators looking for ways to slash spending. From 2009 to 2011, states cut more than $1.8 billion from services for adults and children with mental illnesses. During that time, Illinois cut almost $114 million in general revenue funding for mental health and was fourth in all the states for total cuts. Only California, Kentucky and New York cut more dollars from mental health spending. During that period, Illinois cut its total mental health care budget by more than 30 percent. Only three other states — South Carolina, Alabama and Alaska — reduced their budgets by larger percentages.
The cuts, which are hitting community providers especially hard, came after Illinois has spent years moving away from institutional care for the mentally ill.
In 2011, the Illinois Hospital Association took a look at what care is available across the state. State-run psychiatric hospitals had more than 35,000 beds in the 1950s. By 2009, that number had shrunk to 1,400. Gov. Pat Quinn has closed two more state mental health centers since that count. The number of psychiatric inpatient beds decreased from 5,350 in 1991 to 3,869 in 2010. More than 50 counties that had hospitals did not have inpatient psychiatric care, and 24 counties did not have hospitals.
The report also found that residents in many counties lacked access to psychiatrists.
In 2006, 50 counties in the state did not have a psychiatrist, and 84 did not have a child psychiatrist. The lack of medical health professionals was especially a problem in rural areas. The report said: “In some parts of our state, mental health services simply do not exist — for anyone. In other parts of the state, services are limited in their nature or scope: outpatient services are available but not acute inpatient psychiatric care; mental health services are available for adults but not for children; mental health services are available, but there are no substance abuse services. In almost every part of the state, the person who lacks insurance, especially the single adult male without children, faces closed doors.”
Danny Chun, vice president of corporate communications and marketing for the Illinois Hospital Association, said the situation has not improved since the report. “It’s probably worse. They keep cutting it, and they keep cutting these mental health centers. So actually it’s gotten worse.”
Advocates, treatment providers and state officials all agree that moving patients into community care whenever possible is the goal. But those who work in and assess the state’s mental health care system say there has not been a large enough investment in community care to accommodate the shift.
The state has reinvested some of the money from the closure of the mental health centers into community care. The Department of Human Services focused on support for local emergency health providers by supplying mental health specialists to evaluate incoming patients and transportation for those patients once they have been placed in treatment.
“I think that we were able to redesign the crisis-care system, and we took resources from the closures to support the expansion of crisis care in those regions,” says Lorrie Jones, former director of the Division of Mental Health at the Illinois Department of Human Services. Jones has since taken a job as an adviser in Gov. Pat Quinn’s administration. She says that DHS is making progress on court settlements that require the state to move mentally ill patients who do not want to live in institutional settings out of nursing homes and into community care. “We have new targets for the end of June that we’re working hard to meet,” Jones says. “I think we’re in pretty good shape generally.”
Mark Heyrman, a clinical law professor at the University of Chicago, is spearheading a lawsuit against Illinois because he says the state is not using all the money from the facility closures on community care, as required by law. Jones declined to comment on the lawsuit. “If you close a hospital, then you have to take care of the people being served there,” Heyrman says. However, he says that the crisis-care efforts that DHS has invested in are working. “We sued them only because they didn’t spend all the money [on mental health care], not because we thought they are stupid.”
Heyrman and others in the mental health community say more support services are needed to help the mentally ill be successful in community settings. Support services can include subsidized housing, in-home care, job placement assistance and sometimes efforts as simple as a ride to the doctor’s office. “When individuals have a mental illness everything can be exacerbated and challenging. In many cases, we’re talking about working poor individuals ... individuals who don’t have their own car,” says Lora Thomas, executive director of the National Alliance on Mental Illness of Illinois. She says that any time the ancillary challenges can be eliminated or reduced, patients have a better chance at recovery and maintaining the progress that they have made.
“If someone’s not able to — when they decide they’re ready — access care easily, then they’re less likely — highly unlikely — to make arrangements to get in a car and travel to a community that might be 10 miles, 15 miles, 20 miles, 30 miles away,” says Janet Stover, president and chief executive officer of the Illinois Association of Rehabilitation Facilities.
Sometimes simply having a safe place to call home can make all the difference. “The smartest money spent is in supportive housing,” says Chicago Democratic Rep. Sara Feigenholtz, former chair of the human services budgeting committee in the House. Supportive housing is an affordable place to live that also offers services to residents. It is used by several groups, including people with mental illnesses and developmental disabilities. The services vary widely and can include things such as assistance around the house and medical care. Such help can make it easier for residents to stick to treatment plans and avoid more expensive care in institutions or hospitals. “That extra support can flex in and out, based on the person’s level of need at the moment,” says Lore Baker, executive director of the Illinois Supportive Housing Providers Association.
Because supportive housing serves different populations, it is accessed by multiple state agencies. With the state transitioning people from the closure of mental health centers and developmental centers — and under plans from three different court orders — Baker says it could use a more strategic plan and a single person to oversee it. “We really kind of need a housing czar,” she says. “It’s a pretty complicated world. We need somebody that really gets it all. ... I don’t think we have a good stand above it all and look down and see how it all fits together.”
In February, Quinn announced that Illinois will receive $12 million in federal housing subsidies for more than 800 people with mental health problems or developmental disabilities. “I think that it’s basically a positive step. One of the barriers to creating supportive housing is that affordability for the very-low-income disabled person,” Baker said of the announcement. “Hopefully they will continue to have the [support] resources for the folks who are targeted to use those vouchers.”
While many Illinoisans with mental illnesses live successfully in their communities with the help of support services, few options are available for those who lack private insurance or Medicaid coverage. Jones says this group has “very, very limited access to care currently.”
The state gets a federal match for money spent on Medicaid coverage. Because there is no match for other spending on mental health, those areas of the budget have fallen to the ax year after year. “When budgets get tough, these are always the first lines to get cut,” says Feigenholtz.
“We just simply don’t have a lot of clout. What we have are a lot of people who are passionate about their realization and understanding that we need services. But we don’t have money to spend. We don’t have big lobbying capacity,” Thomas says.
The National Alliance on Mental Illness estimates that in America, 60 percent of adults with a serious mental illness and 50 percent of children with a serious mental illness are not receiving treatment.
Patients without access to community care often end up in emergency rooms, where they can wait hours or even days before being placed in treatment, and some get little more than an assessment. “People are going to interface with a service somewhere, and if it’s not done in a preventative way, which community mental health agencies often provide, then it’s going to happen in some of the more expensive levels of care,” Stover says. “The other thing about mental illness is that when a person decides to seek treatment, there is small window of time within which that resolve on their part exists. And so, if you don’t engage that person, then it’s very difficult to get them into the treatment that they need.”
The lack of access to care has left county jails and state prison systems clogged with people who may be better and more cheaply served in the mental health care system. “There are now more people with serious mental illnesses in the state prison system than there are in all the public and private psychiatric hospitals combined,” says Heyrman. He says the most common crimes committed by the mentally ill are petty ones, such as refusing to leave a business after creating a disturbance and being arrested for trespassing. Last year Cook County Sheriff Tom Dart infamously dubbed that county’s jail “the largest mental health provider in the state of Illinois.” He estimated that 2,000 of the 11,000 inmates held there have a serious mental illness.
Treating mental illness in emergency rooms and corrections facilities is much more expensive than community care, but there are also human costs. “Suicide is absolutely the ultimate loss and the high cost of not providing any services,” Thomas says.
Even when patients are enrolled in Medicaid, providers wait months for reimbursements, and lines of credit are drying up. Stover says some community providers have had to close their doors. “Even a large organization, it is more and more difficult for them to go to a bank and say: ‘Trust us. More importantly, trust the state of Illinois. We’re going to get paid,’” she says.
While the situation for many with mental illness in Illinois is dire, advocates say that the state’s implementation of the federal Affordable Care and Patient Protection Act could greatly expand access to treatment. “The Affordable Care Act is the best thing for people with mental illnesses that has happened in my lifetime. There is nothing else even close,” Heyrman says. The expansion of the Medicaid program under the act could potentially open the door to mental health care for thousands in the state. And more insurance coverage, which will be administered through an online exchange, could increase access to populations that need it most. “Many young people ages 19 to 25 are uninsured. That’s a prime time in life when people don’t have insurance, and yet that’s a time when mental illness may be first apparent and diagnosed,” Thomas says. As of press time, the Medicaid expansion had not been approved in either chamber of the General Assembly. Critics say they are concerned about what percentage the federal government will pay in the future. The feds would pick up the full cost for the first three years. By 2020, the state government would have to pay 10 percent of the cost for the expansion.
Members of the mental health community say they are also encouraged by the proposals coming from President Barack Obama’s administration as it seeks to address violence in the wake of the shooting in Connecticut. “The good news is that the actual list of proposals from [Vice President Joe] Biden’s task force includes lots of suggestions for targeted spending of money on mental health services,” Heyrman says.
But they say that looking at the issue through the lenses of such tragedies has a negative impact, too, and are quick to point out that people with mental illnesses are far more likely to be the victims of crimes than perpetrators. “These [shootings] are exceptions rather than the rule in terms of how mental illness manifests,” Thomas says. But, “some of the families that we are working with certainly fear that their loved one without treatment could be in that position, too.”
She sees the current national focus on the issue as a possibility to “turn the system around” and reinvest in mental health care. “I hope that we all use this as an opportunity to learn more about mental illness, to engage, to break down stigma,” Thomas says. “The brain is an integral part of the body. We really can’t have good health without good mental health. Let’s look at the brain as something that sometimes needs medical attention, too. And deal with it.”
Illinois Issues, March 2013