From the beginning of the Social Security system in America, there was a clear mandate from taxpayers: Take care of our disabled, whether because of birth defect, illness, accident, or warfare. Americans have insisted, and been more than willing to fund, the care of our developmentally and intellectually disabled people.
Once again, however, Illinois' developmentally disabled community is taking an undeserved hit with $76 million in cuts in the governor's proposed Fiscal Year 2012 budget that translates into $540,000 in cuts for Rock Island County, alone. The $76 million represents approximately 6 percent of a $1.2-billion budget for services for 40,000 developmentally disabled individuals in Illinois, leaving a waiting list of 21,000 that includes adults, children, and infants.
Other sources of funding, such as grants from United Way and other not-for-profit organizations, work to fill some of the funding gaps, but these organizations are also struggling, resulting in less available resources each year.
Kyle Rick, executive director of the Arc of Rock Island County, explains: "This community of individuals, including the severely developmentally and intellectually disabled, through no fault of their own, needs the most support, but is least able to ask for it, or defend itself against any decrease in resources."
Across the state, calls are being made and letters and petitions are being sent to lobby Illinois legislators to recalculate the cuts to the developmentally disabled community, because cuts will mean job reductions and the loss of critical services that are often the only lifeline these individuals possess.
As Rick wrote in a letter to State Representative Patrick Verschoore: "From Fiscal Year 2002 through the proposed Fiscal Year 2012 [budget], an 11-year period, we will have had only three increases to keep up with inflation, four years with nothing, and four years of cuts. ... The cuts in Fiscal Year 2012 will be the most severe yet."
Community Alternatives to State Institutions
The hopeful news is that the developmentally disabled services budget actually has viable alternatives to the proposed cuts if legislators would have the courage to act. Of the $1.2-billion budget, $300 million goes to eight state institutions that serve only 1,900 developmentally disabled individuals. The remaining $900 million is allocated for the other 38,100 individuals cared for by community-based services. This is a highly disproportionate distribution of resources.
According to Living with Independence Fairness & Equality Coalition's "FAQ on Proposed Fiscal Year 2012 Budget," "community-based disability services support people with significant disabilities in the communities of their choice with family, on their own, or in residential settings in traditional neighborhoods, offering the opportunity to live full and vibrant lives that maximize independence and full inclusion." (TheArcOfIL.org/LegislativeToolkit)
The FAQ reminds us that community-based services help with everyday living tasks, such as bathing, dressing, and grooming; with medications and therapies; with developing skills for overcoming communication or behavioral challenges; with improving social skills; and with creating work opportunities. Another vital service is offering support and respite to caregivers of children and adults with disabilities, both in-home and in the community. Finally, long-term residential care is provided for the more severely disabled individuals, for whom around-the-clock care is required.
The Arc of Rock Island County has approximately 250 employees caring for disabled individuals through programs administered by Arc Industries, Heritage Fifty-Three, Respite Center, Opportunity Center, Arc Business Supply, and Moments Remembered, to name a few of the vital organizations that serve developmentally disabled individuals in the Quad Cities.
Evaluations of the Illinois developmental-disability system have consistently revealed that individuals being served through community-based services (including long-term residential care) have demonstrably better outcomes in safety and health. State institutions tend to be archaic, less accountable, inefficient, in need of repair, and technologically deficient. Eleven states have closed such facilities in favor of the more cost-effective community-based-services model.
"There is nothing magic about the state institutions," says Tony Paulauski, executive director of the Arc of Illinois. "More and more counties, including Rock Island County, have already closed their state institutions and transferred the severely disabled individuals traditionally cared for in state institutions to community-based residential-care facilities, where they are more than equipped to cope with the level of care required."
In Illinois, seven out of eight institutions were cited with violations - most of which dealt with a lack of proper record-keeping and documentation - during the Auditor General's last report digest (covering 2007 through 2009), which is a limited-scope review of their operations and books. (Auditor.Illinois.gov/Audit-Reports/ABC-List.asp)
In the case of Illinois' 2012 proposed budget, state institutions will require an additional $30-million funding infusion, the lion's share of which is allocated to wages and pensions for employees of these facilities. Meanwhile, cutting the budget by $76 million for community-based services will result in the loss of federal matching funds of $31million.
To better illustrate, the average annual cost of caring for an individual in state institutions is $192,000. The average annual cost of caring for an individual via community services, including residential care, is $50,000. Nearly four individuals can be served with community-based services for every one person in an institution.
With the cost/benefit analysis so clearly weighted in favor of community-based services, what is keeping legislators from making the conversion away from state institutions? The answer lies in jobs, and the reluctance of the American Federation of State, County, & Municipal Employees (AFSCME) to allow those jobs to migrate away. State institutions pay significantly higher wages than community-based services for the same jobs - on average $53,000 to $28,000.
Community-based-service organizations are mostly private-sector groups that contract with the state to provide care for the developmentally and intellectually disabled; therefore only half of their employees are AFSCME members.
AFSCME is in a difficult situation in this particular case because, while it's fighting to keep public-sector wage and benefit packages at current levels that include annual raises, some of its members' jobs in the community-based-services sector will be sacrificed for AFSCME's greater good.
Illinois' proposed budget is calling for 950 new jobs throughout state government - averaging $50,000 in salary and benefits and costing approximately $47.5 million overall - as well as an 8.25-percent raise for the current state workforce staggered over 18 months, according to Paulauski.
Meanwhile, 3,052 jobs in the community-services sector are in jeopardy, as are critical services for our disabled community that those jobs provide. "Last year's cut of $16 million negatively impacted services for approximately15,000 individuals because of loss of services due to program shut-downs," Paulauski says.
Clearly, the Illinois legislature needs to better sort out its priorities. It is one thing to have to make necessary cuts because there are no alternatives. It is entirely another thing when those cuts greatly benefit one segment of society at the hugely disproportionate expense of another segment, especially a segment that has zero other options for care and survival. Legislators are sending the message that our disabled are disposable - a message that should be met with statewide resistance, including by AFSCME members, who are 90 percent of Illinois' public-sector workforce.
Because of a deal Governor Pat Quinn made with AFSCME last year - which does not allow for any layoffs of state employees - hands are tied within many agencies because they have no control over their labor costs. With contractual raises to account for, operational cuts loom large. A major concern is that the proposed budget cuts will cause community-based-services programs to shut down, creating a network of employees with nothing to do because the programs they were hired for will be gone.
By closing or downsizing the number of state institutions, their funding - including for labor and facilities - could be absorbed into community services, creating enormous savings. The savings could then be reallocated to far more efficient, successful programming that would keep services for the current 40,000 individuals, cover the 21,000 on waiting lists (Rock Island County has an active waiting list of 155 individuals), and perhaps begin to address the 180,000 additional developmentally disabled individuals in Illinois who receive no services whatsoever.
"The State of the States' Developmentally Disabled," a 2008 report by the University of Colorado that was released to providers in 2010, rated Illinois 51st among states and the District of Columbia relative to its care. More cuts will only aggravate this dismal rating. Implementing a planned reduction of half of the state institutions would be a start. Freezing any new hires for the facilities beginning in 2012, and other cost-saving measures that focus on this goal of transferring services, could alleviate some of the pressure on the community-services budgets.
Frustrating the 2012 budget process this time around is the sizable discrepancy between House and Senate revenue projections - $33.2 billion and $34.3 billion, respectively. They are more than $1 billion apart, causing cuts to be deeper for the House's budget because its revenue projection is lower.
The Commission on Government Forecasting & Accountability, a bipartisan body established specifically for the purpose of revenue projection, estimates revenues for Illinois in 2012 at $34.9 billion, which includes a portion of the new income-tax increase (from 3 to 5 percent), as well as $720 million from two plans not yet approved by legislators - one that would cut state corporate-income-tax refunds and another that splits state tax practices from a federal tax plan. As such, only the governor's budget is using that figure. Because the House and the Senate have derived their own projections, negotiations are more convoluted.
Regardless, the community-based-services budget cuts have a remedy - one that requires moral as well as fiscal determination to accommodate the most vulnerable segment of our society. There is no worthy argument for greatly diminishing the quality of life for our disabled individuals.
Paulauski has been working tirelessly for months to convince legislators to reconsider the community-based-services budget before the May 31 deadline to pass a state budget with a mere majority of both chambers. "This is an upside-down budget," he admonishes. "It kicks families in the shins; it's devastating to the children and adults who are intellectually and developmentally disabled. We are supposed to take care of these people first. Everything else is secondary."
Visit TheArcOfIL.org for more information, including examples of letters and fact sheets for distribution to family, friends, and neighbors, to support and help Arc convince legislators to reverse the proposed cuts and restore the vital funding to Illinois' 2012 community-based-services budget. Let's enable - not disable - the disabled, who are counting on us to protect them.