Amy Hickman, a single mother of two in central Illinois' Jacksonville, lives with multiple sclerosis and is wheelchair-bound after a car accident. She relies on her home health aides to get her out of bed every day.
David and Beverly Pryor of Arcola have a daughter, Mandy, with severe autism. She lives in a CILA, or a community integrated living arrangement, in Charleston. But they want the state to fund more CILAs to help clear a waiting list so other children and adults can have the same opportunity.
James Duncan, a former drug addict in Springfield, says he's sober and able to stay out of prison because he was able to move through a waiting list to access substance abuse treatment.
They all came to the state Capitol — separately — within two days of each other this spring to speak with state legislators, urging them to maintain or increase state funding for services that provide core governmental functions, including education, health care, employment and housing. Legislators also heard hours of testimony from community agencies seeking money for services, but there were so many witnesses that each was limited to speaking three to five minutes.
That same day the witnesses converged at the Capitol, Gov. Rod Blagojevich proclaimed the last week of April as Supportive Living Week to shine a spotlight on a successful program that offers apartment-style living for seniors on Medicaid, an alternative to nursing homes. But also on that day, another group of advocates brought attention to a dark spot on the state's human services, designating Illinois as “51st and failing” to support community-based services for people with developmental disabilities and mental illnesses.
That sunny April day exemplifies the status of human services in Illinois — there are bright spots, but they're often overshadowed by gloomy blots that challenge the most vulnerable citizens in accessing the wide range of government services they need.
Inside the Capitol, lawmakers' attention this spring is consumed by competing requests for funding education, health care and public infrastructure. Those involved in human services committees agree that there's a dire need to better fund social services, but they also agree that throwing more money into the existing system won't solve the problems.
In the field, community service providers say that while legislators debate ways to bring new revenue into the state, human services aren't part of the discussion about ways to benefit from that money.
A new coalition hopes to change that. The Illinois Human Services Coalition started a grass-roots effort with the hope that a broad range of providers could band together and convince lawmakers that human services as a whole need to be part of the discussions in rebalancing the state's budget priorities.
Leading the all-for-one approach is Don Moss, chair of the new coalition, as well as a Springfield lobbyist for health care association and executive director of United Cerebral Palsy of Illinois.
“Human services seem to be left waiting outside when the plan comes for how the money is to be spent,” he says. “And we don't want to be in competition with education. We just want our place in line when new monies do come down.”
Ann Ford, executive director of the Illinois Network of Centers for Independent Living in Springfield, says in her 25 years of advocacy work in this state, this is the first time so many different providers have joined forces rather than launch individual campaigns to win funding from the same pot of money.
“It's not me going in one minute and talking about disability issues and somebody else coming in behind me talking about a totally different human service issue, and then the legislators have got to decide, ‘Well, which one of these do I support?'”
The broad-based approach reflects the nature of the human services system, as individual clients often need multiple services to get back on track. For instance, Ford says she wouldn't support cutting funds for child care any more than she would support cuts for domestic violence programs because her clients often need both while trying to rebuild independence and self-esteem.
“All of these are services that if our state doesn't fund, they're going to go away. And the result of that is going to be, people are going to hurt. People are going to die. People are going to lose out on opportunities to really have the kinds of lives that they want.”
The new coalition's effort faces major challenges, however. The grass-roots movement could struggle to compete with well-organized lobbying groups for legislators' attention.
“It's become a phrase, ‘It's a tight year,' meaning we're going to fund what we want to fund and whoever gives us the most pressure,” Ford says. “We make a lot of noise, and we're pretty consistent about being there and being heard. But we aren't big. We're not a lobby, as such. We have no money to put into anything political. We just do it with grass-roots advocacy, and that's what gets overlooked.”
She says all human services are neglected, a situation that is complicated by political and personality battles that distract lawmakers from what's happening around the state. “It's absolute lack of importance on the part of the people that make the decisions and pass the budgets.”
One problem that gets little attention in the media and in the Capitol includes two federal investigations into state-operated developmental centers for potential civil rights violations.
William A. Howe Developmental Center in Tinley Park, a Chicago suburb, already was decertified by the federal government in spring 2007 when reports documented such violations as clients being unnecessarily drugged or restrained without medical justification. In one instance, a man was recorded as weighing 120 pounds in April 2006 and just less than 100 pounds six months later. Nurses reported that the scales were always inaccurate. Another resident was found outside of the facility near a busy intersection.
Decertification by the federal government doesn't mean the facility has to close. It simply means the state no longer receives federal Medicaid matching funds for the institution.
The Illinois Department of Human Services continues to operate and fund Howe Developmental Center, allocating about $55 million each fiscal year without a federal match.
Lilia Teninty, director of the Division of Developmental Disabilities within the state human services department, says in the year she's been working with Howe, the state brought in a new director, hired consultants, retrained staff and revamped clinical and medical standards — not just for Howe, but for all nine state facilities. The state currently does not plan to close Howe, which housed 343 residents in early May.
“Right now our plan is to improve the quality of care for the people who live at Howe,” Teninty says. “We've been diligently working towards that effort over the last year. The goal is to improve the quality of care and prepare the center for recertification.”
According to Teninty, the U.S. Department of Justice also is investigating Howe and Choate Developmental and Mental Health Center in Anna in southern Illinois. In mid-May, the state was still waiting for the official findings of those two investigations.
“The fact that they think there is reason to believe that the civil rights of people in our institutional settings are being violated is a concern,” Teninty says. “That is something that is raising the bar and is putting pressure on us, as it should, to improve the quality of care across the system, across all of our state-operated centers.”
As part of another effort, the state is putting more money into services to help clients transition out of the larger institutions into privately owned homes in the community, something advocates nationwide say is the future of services for people with developmental disabilities.
But advocates within Illinois say the effort falls behind all other states.
In fact, Illinois ranks 51st in the nation, including Washington, D.C., for supporting people with disabilities in communities with fewer than six clients, according to a 2008 report out of the University of Colorado's Department of Psychiatry and Coleman Institute for Cognitive Disabilities. Most of Illinois' funding still goes to larger state-operated facilities.
Another 2008 report, called Blueprint , was commissioned by the Illinois Council on Developmental Disabilities, an independent state agency that's federally funded and charged with the mission to ensure that people with disabilities are part of their communities. The report shows that more than 11,000 people sit on a waiting list for developmental disability services. It also recommends closing five state-run facilities, moving staff to other state jobs and transitioning residents to smaller, community-based settings. The idea is part of a seven-year plan for systemic change and reshuffling of state dollars, with the goal of directing more money to the people who use the system rather than to large institutions.
The idea to close state facilities, however, has vocal opposition from families who fear moving their loved ones and from union-backed workers who fear for their jobs.
Sheila Romano, executive director of the council, says: “Certainly, we need to worry about the workers. They are an important piece of the formula. But we shouldn't be making policy decisions on that first. We should be making the policy decisions on the people who are being served by the policies.”
She adds that while the recommendations within the Blueprint report are controversial, the state has to stop taking a one-year look at solving a single problem and start looking at ways to solve multiple problems throughout the entire system.
“We don't want to throw more money into a broken system. We need to very much look at how we're improving the system. And the Blueprint looks at many comprehensive areas that we need to look at. And we need to look at all of them together, not just look at one in isolation and think that the problem is fixed.”
But systemic change carries a $250 million price tag.
“That is a lot, and we know that,” Ford says. “And that's just to get to the national average.”
Illinois Senate Minority Leader Frank Watson of Greenville says the state could have saved $165 million just by closing Howe when it was decertified, and it would have improved patients' safety.
Benjamin Wolf, associate legal director for the American Civil Liberties Union of Illinois, also believes the state should close Howe. “It's fiscal madness for the state to keep these places open that violate standards and don't get a federal Medicaid match because they're so bad.”
The civil rights advocacy group has filed multiple lawsuits alleging that the state is denying civil rights by failing to help individuals transition to smaller, community-based settings. But it has not initiated a lawsuit specifically to close Howe — yet.
“We think the state should close Howe, and I suppose eventually we'll probably have to deal with that in litigation if the state won't,” Wolf says.
Persuading lawmakers to put money into human services also faces a challenge because legislators and agency officials have a hard time wrapping their arms around the cosmic size of human services.
The two state agencies that administer related programs — the Department of Human Services and the Department of Healthcare and Family Services — consume about 46 percent of the state budget, or nearly $23 billion.
Rep. Patricia Bellock, a Hinsdale Republican who serves on the House Human Services Committee, says some legislators ask why they should give human services more money when it gets so much money already and when state officials have little ability to track efficiency.
“I think that a lot of people feel that way, but they don't sit through the meetings,” she says.
The human services committees in both chambers listen to agencies testify about food stamps for low-income families, unemployment insurance for people who lose their jobs, home health aides for people with disabilities, drug and alcohol treatment for recovering addicts, therapy and housing for people with mental illnesses and shelter and child care for victims of domestic violence. The list goes on.
And each service has a complex and different funding source, often shaping the way the state uses the money and the way clients access the services.
For instance, the state administers Temporary Assistance to Needy Families, or TANF, with a federal grant from the Medicaid program. But it's a fixed amount regardless of whether the caseload increases. The money also goes into the state's general fund, which allows state officials to spend the money on anything from job training to energy assistance or child care.
Federal funds for alcohol and substance abuse treatment, on the other hand, come with a lot more strings attached. All of the federal reimbursement money must go toward treatment. The state has spent about $86.6 million during each of the last three years.
Advocates say that's not enough, pointing to a 2008 study that says the waiting list for assessments or treatment increased from 6,400 in 2006 to 7,540 in 2007. Conducted by the University of Illinois at Chicago, the study was funded by the Illinois Department of Human Services' Division of Alcoholism and Substance Abuse and commissioned by the Illinois Alcoholism and Drug Dependence Association.
Duncan, a former drug addict and current client at Gateway Foundation in Springfield, said in a Statehouse news conference last month that when he was last released from jail in 2007, he relapsed and tried to find help. But every place he called said it would be up to three months for him to receive outpatient treatment.
“I needed it right now, immediately,” Duncan said, “because I had started to use again, and I knew that was just going to cause the problem of me going back to the Department of Corrections for either the use of drugs or the possession of drugs or an illegal activity to obtain those drugs.”
Keith Kuhn, community director at Gateway Foundation in Springfield, said at the same news conference that the facility has 46 beds available for residential programs, but it only has enough funding to fill 38 of them.
“So we're not even able to maximize the use of the existing capacity, let alone add additional capacity,” he said.
He said any new funding would go directly to treatment rather than to startup costs because the beds and the chairs for outpatient services already are available, just unused.
Another challenge is recruiting enough staff to work and to stay.
Haymarket Center, an alcohol and drug treatment center in Chicago, lost 25 percent more staff members this year than last year, said the vice president, Anthony Cole, at the same news conference.
“Staff are leaving this field in droves and droves. So we have difficulty in even trying to hire staff.”
Entry-level applicants with a college degree would get paid $25,000, which Cole said leads community agencies to hire people with less and less experience.
The state did mandate an increase in minimum wage last year to $7.50, but Cole said the state didn't increase the agency's funding to cover that mandate. In fact, it hasn't gotten an increase in state funding for five years, further pinching his agency from hiring staff, maintaining services and paying utility bills, he said.
Some service providers don't care how the state gets the money, just that human services are part of the discussions when it comes time to dole it out.
But given the ongoing political stalemates among the state's legislative leaders and the governor, lawmakers' ability to compromise on ways to bring in the amount of cash needed to fund education, health care and construction needs remains to be seen.
In the meantime, community service providers and state lawmakers do have alternative options.
One strategy is to capture more federal funds available for human services. Sen. Jeffrey Schoenberg, an Evanston Democrat, places hope in a so-called hospital assessment program. In the current program that expires this month, hospitals pay a tax to the state. Then the state gets $3.6 billion in federal reimbursements over three years. Much of the money goes to hospitals that primarily care for uninsured and Medicaid patients. But money left over has funded services for people with developmental disabilities and mental illnesses.
Schoenberg said last month that he would like to use the next hospital assessment program, which the state has to approve and then apply for federal approval, for drug and alcohol addiction services.
“This is a very proactive investment because it will keep people out of emergency rooms, where the health care tends to be the most expensive for all of us.”
The absence of new state revenue or federal funds, Schoenberg adds, would probably lead to a collapse of much of the state's health care and human service infrastructure.
Illinois Issues, June 2008
Joyce Newman of Jacksonville holds a sign supporting Senate Bill 2256, seeking funding to help children with developmental disabilities receive an education that's not segregated from the rest of the students. She also advocates for affordable housing and wheelchair accessible facilities.
Janet Stover, executive director of the Illinois Association of Rehabilitation Facilities in Springfield, joins state legislators to announce that Illinois is “51st and Failing” in supporting community-based services for people with disabilities. Also pictured, from left, are Sen. A.J. Wilhelmi, a Joliet Democrat, Sen. Rep. Elizabeth Hernandez, a Cicero Democrat, Rep. Kathleen Ryg, a Vernon Hills Democrat, and Rep. Patti Bellock, a Hinsdale Republican.
Photographs by Bethany Jaeger