New report shows how Illinois government fails many of its disabled constituents

From Progress Illinois:

The disability rights movement has made significant strides since the passage 20 years ago of the Americans with Disabilities Act (ADA), which prohibited discrimination on the basis of disability. Before the law was enacted, people with disabilities often lived in society's shadows; earning an education, finding a rewarding job, and participating in community life were by no means a given right. Thanks to the work of some dedicated crusaders, many based in Illinois, countless barriers that prevented the disabled from living independent lives have been razed.

That's not to say their work is over. On Friday, the Persons With Disabilities Fund -- an off-shoot of the Chicago Community Trust (CCT) -- unveiled a new white paper at a packed conference in Chicago tracking Illinois' commitment to the state's disabled population, which is 1.3 million strong and growing. "A Quest For Equality," which compiled existing public data on demographics and state funding, found that Illinois needs to double-down on its commitment to progressive reforms in several subject areas if the state wants to address these pressing civil rights questions in full. "Illinois is not a leader," said Andy Imparato, the president of the American Association of People with Disabilities. "It's behind on a lot of key indicators."

First, let's quickly review the basics about the disabled in Illinois. People with disabilities make up 10.1 percent of the population here, touching families in every nook and cranny of the state. Of folks over the age of 65, a massive 35.7 percent report at least one qualifying condition. In the working-aged population (ages 18-64), the rate is still large, totaling 7.9 percent. About 329,000 Illinoisans in that age range, for example, report some ambulatory difficulty and roughly 229,000 have difficulty living independently. Disabilities are also strongly correlated with both poverty and isolation; Illinois' disability community is disproportionately black (23 percent) and poor (24.9 percent versus 10.9 percent for those who are able-bodied).

The report shows quite clearly that many schools in Illinois still do not serve disabled students adequately. Part of the problem is that kids are segregated from their peers at a slightly higher rate than in other states, a concern the federal government sought to address when it passed the Individuals with Disabilities Education Act (IDEA) in 1975. (In special classrooms, academic standards are often lower than in mainstream rooms.) By 11th grade, for example, only 14.5 percent of disabled students who take the Prairie State Achievement Exam meet or exceed state standards in core subjects, compared with almost 60 percent for the rest of students.

Without a sound education or transition plan in place, employment options are restricted, as well. Combined with existing stereotypes held by potential employers and what the report cites as "significant disincentives [that] keep many people with disabilities out of the workforce" (including the possibility of losing long-term health care benefits provided through Medicaid), it can be incredibly tricky for some disabled people to secure and then keep a sustainable job. The employment rate among working-aged disabled people is half that of the general population (35.9 versus 74.1 percent). For those with jobs, median annual earnings are considerably smaller ($19,800 versus $30,200), too.

The disability movement (and the Obama administration) is also focusing more effort on integrating people into small, family-scale facilities of their choice, not in state-run or private institutions where they have traditionally received care. (A 1999 U.S. Supreme Court case, which many in the disability community compare to the Brown vs. Board of Education decision in its significance, stated that the unjustified institution of a disabled person violates the ADA.) Currently, Illinois directs a majority of its funding for disability services through state institutions, including 17 large "state-operated" centers; a 2008 study found that Illinois ranks 49th in the nation for adults who are served in small community settings.

CCT and others in the disability rights community argue that community living, which is now unaffordable for most without state assistance, is cheaper to administer and more comfortable for those who want greater autonomy. (That cost disparity is likely correlated to some degree with both the medical needs of those in institutions, which public employees note is higher than those in the population at large, and the wages workers receive, which are currently lower in smaller settings.) "With a little bit of adjustment to certain state programs and funding," the report notes, "many institutionalized individuals could function successfully in small community-based settings or in their own homes with some assistance."

There's hope that significant progress can be made on these fronts in the near future, particularly if stakeholders -- lawmakers, public employee unions, doctors, teachers, and members of the disability community -- work collaboratively to ensure any changes benefit everyone involved. Indeed, CCT and its allies think that a comprehensive, long-term strategy to address gaps in these three key areas could achieve better outcomes for disabled people statewide while reducing the cost to the state.

The cost question is obviously a major concern. The state's initial appropriation for the Department of Human Services (DHS) was $1.5 billion less in FY 2011 than one year prior. Gov. Pat Quinn initially reinstated $1.18 billion of that total using his special budget authority before lopping off $264 million to satisfy calls for "fiscal discipline." As a result, DHS funding is down $576 million, which will decimate grant programs for non-Medicaid funded community mental health and disability services. Since 2000, meanwhile, the Center for Tax and Budget Accountability calculates (PDF) that funding for human services (broadly defined to include the Departments of Aging, Children and Family Services, and Human Services) has fallen by 28.3 percent when adjusted for inflation and population growth.

For each category in their report, CCT identified several goals they want the state to meet by 2015. (Read them all here.) Their targets include shifting some funding toward local settings, narrowing the education achievement gap, and increasing the employment rate by 5 percent. Oregon State Rep. Sara Gesler (D-Corvalis), a leader on disability legislation in her state government, thought the timeframe is aggressive but that the expectations themselves are "clear and measurable." And most of those attending the conference agreed that the legislative recommendations -- enacting a permanent Money Follows The Person law, ensuring special education services are fully funded in every school district, and beefing up the state's Medicaid buy-in program for workers, among others -- were realistic to pursue.

In his opening remarks, CCT's Terry Mazany told the crowd that he hoped his organization's report would one day be considered a "catalytic milestone" in Illinois disability policy. In 2015, on the 25th anniversary of the ADA, we will see if his dream became a reality.