Nine charts underscore the decline of disability services in Illinois

Pardon this Vox-like deep chart-dive, produced of course without Vox’s actual chops in this area.

Illinois attracts national attention because we are now enmeshed in a political and budgetary standoff between our Republican Governor Bruce Rauner and the Democratic legislative majority. It is a governance disaster. It has deeply damaged public services, along with our state’s bond rating and national reputation. We are now running large budget deficits caused by our unduly low and flat income tax, which is 11th lowest in among taxing states, and our chronically under-funded public employee retirement systems, whose bills are coming due.

Of more immediate import, we have had no state budget since July 1, 2015. We may not have one for the next fiscal year, either. Money still flows through Medicaid. Our embarrassing array of court-supervised services are still being funded. Outside of that, though, many other services are being seriously harmed.Nonprofits with strong fiscal reserves soldier on. Illinois owes Catholic Charities $25 million, for example. Marquis nonprofit and social service agencies have cut services or are simply closing.  The layoff notices sent to every employee of Chicago State University and the current nonpayment of promised state financial aid to 130,000 college students exemplify the harm to students and staff at important institutions of higher education who are injured bystanders in the continuing political standoff.

To resolve the current standoff, what must happen is as clear as the two-state solution in the Middle-East, and seemingly as difficult to achieve. Both parties need some dignified path to at least a normal interim budget. Illinois desperately needs a progressive tax increase. We must remove every fiscal policy provision and constraint from our state constitution. We must impose a higher level of professionalism and fiscal transparency within our broken state politics that have lost both their effectiveness and their public legitimacy.

Less well known are the serious challenges Illinois has faced since well before the current fiscal crisis. We have long ranked near the bottom in national rankings of intellectual disability services. In 2015, United Cerebral Palsy’s “Case for Inclusion” ranked Illinois 47th in the nation in the quality of state Medicaid services for individuals and families in the arena of intellectual and developmental disabilities (IDD). In many ways, we are slipping further behind.

I recently delivered an intellectual disability lecture at Lurie Hospital on Chicago’s north side. I heard about parents of children with special needs who are leaving the area. I heard stories of successful professionals moving just across the Wisconsin border and commuting to the Loop.

As a caregiver myself for someone with fragile X syndrome, I certainly sympathize with these choices. When my brother-in-law Vincent moved in with us in 2004, we were rescued by critical programs that have since been ended or curtailed. If he joined us today, we would face far longer waiting lists and would receive much more limited help. Although I love the opportunities and collegiality at the University of Chicago–and notwithstanding my low state income tax bill–I often wonder whether we should have left Illinois for a state that offers better services.

Consider the below charts, all but one of which are taken from the unique resource, State of the States in Intellectual and Developmental Disabilities. And remember, these data stop in 2013, well before Illinois’ current budget crisis.

Illinois spends less than most states do, and spends less (in inflation-adjusted terms) than it did ten years ago. 

The first graph shows inflation-adjusted public spending on intellectual and developmental disability services across the nation. The graph shows remarkable and steady growth, roughly 7.99 percent above inflation since 1977, driven by Medicaid.

 

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Source: State of the States in Intellectual and Developmental Disabilities (2015). United States data. Retrieved from http://www.stateofthestates.org/documents/UnitedStates.pdf

 

Below is the corresponding graph for Illinois. As you can see, state expenditures peaked in 2002, and have notably declined since then.

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Source: State of the States in Intellectual and Developmental Disabilities (2015). Illinois state data. Retrieved from http://www.stateofthestates.org/documents/Illinois.pdf

 

It’s not because we are poor, either

Below are the corresponding figures for “fiscal effort”—that is, spending per $1,000 in personal income.

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Source: State of the States in Intellectual and Developmental Disabilities (2015). United States data. Retrieved from http://www.stateofthestates.org/documents/UnitedStates.pdf

By this measure, too, Illinois is far below other states.

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Source: State of the States in Intellectual and Developmental Disabilities (2015). Illinois state data. Retrieved from http://www.stateofthestates.org/documents/Illinois.pdf

 

Illinois underspends particularly egregiously on home and community-based services–even compared with our Red State neighbors.

The two charts above show that Illinois lags especially far behind in the arena of home and community-based services, where we spend barely half the national average as a percentage of our state income.

We lag far behind our neighbors, too. It’s not a Blue vs. Red state thing, either. Some of our midwestern peers, such as Minnesota, are reliably liberal. Indiana, Ohio, and Wisconsin have prominent conservative governors. Each of these states spends at least twice as much per-capita as we do.

2013 State HCBS waiver expenses/capita
Source: 2013 State HCBS waiver expenditures per capita. Source: Institute on Public Policy for People with Disabilities

There’s not enough housing on a human scale in community setting

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Source: State of the States in Intellectual and Developmental Disabilities (2015). United States data. Retrieved from http://www.stateofthestates.org/documents/UnitedStates.pdf

Over the past forty years, states have sought to reduce their reliance on institution-based care. Most individuals with intellectual or developmental disabilities live much better on a smaller scale, in their family homes or in smaller, community-based group homes more formally known as CILAs [Community Integrated Living Arrangements]. As shown above, only about 18% of national IDD spending is for public or private institutions, or for living arrangements of seven individuals or more.

Despite real progress accelerated by lawsuits and judicial decrees, Illinois remains unusually dependent on institutional and large-facility-based care. As you can see below, Illinois spends about 46% of its IDD expenditures on public or private institutions housing seven or more.

 

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Source: State of the States in Intellectual and Developmental Disabilities (2015). Illinois state data. Retrieved from http://www.stateofthestates.org/documents/Illinois.pdf

 

Illinois offers fewer opportunities to work

Opportunities for supported employment has been a godsend for Vincent and for our entire family. The national trend shows steadily increasing participation in supported employment and day work.

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Source: State of the States in Intellectual and Developmental Disabilities (2015). United States data. Retrieved from http://www.stateofthestates.org/documents/UnitedStates.pdf

Not so in Illinois.

For reasons I don’t fully understand, participation and supports in day work have plummeted since 2009. By 2013, the number of participants was well below the levels of 1988, thirty-seven percent below the number of placements available when Vincent joined us twelve years ago.

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Source: State of the States in Intellectual and Developmental Disabilities (2015). Illinois state data. Retrieved from http://www.stateofthestates.org/documents/Illinois.pdf

 

Low wages and budgetary pressures are key drivers of these problems.

Ronnie Cohn, a Court-appointed monitor for IDD services in Illinois, released a January 2016 report detailing challenges to the care system. Leaving aside issues created by the budget crisis, Cohn noted the harmful impact of long-term trends. It’s especially galling that IDD providers compete with such mixed success with fast-food restaurants and other low-wage employers. Individuals and families then wait for services because local  providers cannot hire and retain adequately staff to meet service needs.

As Cohn puts things:

Low wages [are] creating a staffing crisis for providers of all types of services. .

Three agencies reported having from 39 to 65 DSP [Direct service professional] positions vacant and are therefore not considering any referrals for residential expansion…

Chicago-based agencies are struggling to remain competitive with other employers in the area due to the city-wide minimum wage increase to $10.00 per hour effective July 1, 2015, with no commensurate increase in reimbursement rates.

The average (not starting) DSP’s wage is $9.35 per hour which is insufficient to maintain staff. Even the providers who are able to pay $1.00 to $2.00 more per hour are experiencing significant vacancy and turnover levels

Cohn’s quotes from local nonprofit managers are hardly reassuring:

“In my 40+ years working in the disabilities field in Illinois, I have never encountered such a staff recruitment problem. I would characterize is as a desperate situation…”

“Without doubt, the number one issue affecting quality of life and the basic issues of safety and freedom from harm is the inability to recruit direct support staff because of the noncompetitive entry wage level.”

“Inability to attract and retain staff and uncertainty of future funding levels are the main factors that limit providers’ ability to open new CILAs. Across the board, providers would be able to increase their capacity and open new homes, but they have no way of staffing them.”

“A four-person CILA… has been ready to open for four months but remains vacant because the agency cannot adequately staff existing operations.”

Cohn’s findings are consistent with other data. In one recent IDD provider survey conducted by the Institute on Public Policy for People with Disabilities, the average annual turnover rate among direct service staff was 30.3%.  Average hourly wages remained below $10. Forty-five percent of DSPs rely on some form of public benefits, despite full-time employment. Between 2003 and 2013, adjusted median hourly wages for Illinois DSP staff rose from $9.28 to $10.18. Corrected for inflation, this amounts to a 13% pay cut.

Eighty-two percent of responding agencies reported that they were unable to accept referrals for people who required intensive staff support. Seventy-four percent indicated “lack of qualified job applicants” as a critical organizational concern. Sixty-three percent identified “insufficient wages.”

The scary part is that IDD services are in better shape than many other social services in Illinois.

Illinois’s chronic bipartisan governance failures have produced a terrible situation for people who live with intellectual disabilities and for their families. The really frightening part is that IDD services are in better shape than many other social services in Illinois. IDD services have also fared better than others during our current budget crisis. IDD services are court-monitored, and the IDD community is much more sympathetic and more politically organized than many others in equal need of help.

One way or the other, Illinois will resolve its current budgetary standoff. I hope this produces long-term reforms. Every major stakeholder, political party, and interest group has contributed to our state’s governance failures. Every one of them must give up something to fix it. We cannot operate a state government with poor long-term fiscal planning and oversight, blue-state expectations for service delivery, and red-state expectations for low and flat state income taxes. In my twenty-five year career in public policy, I’ve never seen anything quite like this.

Author: Harold Pollack

Harold Pollack is Helen Ross Professor of Social Service Administration at the University of Chicago. He has served on three expert committees of the National Academies of Science. His recent research appears in such journals as Addiction, Journal of the American Medical Association, and American Journal of Public Health. He writes regularly on HIV prevention, crime and drug policy, health reform, and disability policy for American Prospect, tnr.com, and other news outlets. His essay, "Lessons from an Emergency Room Nightmare" was selected for the collection The Best American Medical Writing, 2009. He recently participated, with zero critical acclaim, in the University of Chicago's annual Latke-Hamentaschen debate.

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