Last Line of Defense
(It has been quite a while since I posted my last blog entry. However, with distractions of many kinds now behind me, I intend to post several new items in the upcoming days. The first of these blogs focuses on what worries many Illinoisans these days, and that is the state budget crisis. Managed care is the next subject I will tackle, paying particular attention to the stakeholders meetings with the Department of Health Care and Family Services. You will also notice the blog's name remains the same. It seems the old adage—“if It ain't broke, don't fix it"—applies here.)
It has been a busy month, especially at the State Capitol of Illinois. During that time, after many hours in committee hearings and numerous phone calls to legislative staff, I knew I needed to write about the experience and inform many of you about what is happening in Springfield. Yet, simply a rote summary of the past few weeks' events was not going to give you a full grasp of our victories and our ongoing battles. I am not going to give you a play-by-play commentary of each event, but I will try to bring some meaning to what otherwise would be simple descriptions.
As I thought about how to do this, I realized a central theme was emerging. It was the notion of participatory democracy. That is not a complex, abstract political science term. It simply refers to citizens becoming involved in how their government on the local, state, and national levels functions and responds to their needs and demands. We often discuss this idea, especially in the context of advocacy. We tell people they should vote and become involved in the election process. We tell people to contact their legislators and members of Congress to make them aware of their constituents' views. We tell people to attend meetings and express their opinions. However, too many times, we exhort people to become involved in the political process without explaining why or how important it is. If we tell people to question authority and not blindly follow or believe what politicians and bureaucrats tell them, how can we expect them to take our advice and act upon what we say without giving them reason to believe us and to trust what they do makes a difference?
Complaining about lack of involvement is not the answer. Neither is discussing this issue on one blog post going to make that much of a difference. Still, doing nothing results in our worst fears coming to life. Years ago, words held immense power, and I believe they still do today. When faced with corruption, inaction, and disinterest by the government that flew in the face of the American Revolution, many people realized the power to change the status quo rested within the hands of the public, those not ensconced in government and politics but those most affected by those institutions. It was during this time of the late 1960s and early 1970s that John Gardner, founder of Common Cause, wrote, “The citizen can bring our political and governmental institutions back to life, make them responsive and accountable, and keep them honest. No one else can.” No matter how mired in skepticism and doubt, that fundamental idea holds true to this day and this time.
On Thursday, April 22, advocates from every corner of the state had the opportunity to speak before the Illinois House Human Services Appropriations Committee, chaired by Representative Sarah Feigenholtz. Panel after panel came forward to testify on the harm the Governor's proposed budget would have on a host of different interest groups. Advocates for children, women, seniors, and immigrants—to name but a few—spoke to the damage their programs would face if the planned budget cuts become reality. As advocates for the disability community waited to speak, we heard other advocates, who were just as passionate, discuss disappearing jobs, radically diminished services, and often the complete inability to maintain operations at any level. They did not attend the hearing to claim their programs were the best in the state or to beg for money. They came before the committee to have their voices heard, to have someone listen to their reasoned arguments, and to make sure those for whom they advocated were not forgotten.
Mental health advocates sounded the alarm regarding cuts to their programs. The Division of Mental Health within the Illinois Department of Human Services (DHS) will see its budget cut by $90 million, if the Governor's proposals become reality. One cannot overstate the devastating impact this lack of funding will have upon individuals with mental illness. Suddenly, instead of community services providing counseling and medication as they currently do, emergency rooms and prisons will take their place, leading to overcrowding and lack of service. People with mental illness, who currently are benefiting from services within the community, eventually, will have less qualified care provided by untrained individuals caught in the middle of the state's human services crisis. Advocates made this point clear to the committee, and several panels, discussing the need for more mental health funding, reinforced the same ideas.
The hours passed, and I could see the tired and glazed looks on the faces of the committee members. Yet, to their credit, they allowed nearly everyone to speak and voice their complaints with which many of the committee members agreed. Even so, I can only imagine how hearing the same story repeatedly stretches the patience and brings forth less empathy. Though I felt for the committee members, I also knew they held the answers, at least, in part, to this budget crisis, which, in reality, in a crisis of conscience. To act surprised at the state's current fiscal catastrophe is to belittle the jobs that representatives and senators were elected to do and the people who elected them to do those jobs. To act as if no solution exists is to demean the intelligence of those of us who know better. Just as state elected officials take an oath to uphold the Illinois State Constitution and serve their constituents, the informed citizen has the obligation to ensure transparency, accountability, and responsibility among their elected representatives. We neglect this duty at our own peril.
After nearly four and a half hours of testimony, the committee called forward the panel to discuss disability issues. Those speaking included: Janet Stover from the Illinois Association for Rehabilitation Facilities (IARF), Don Moss from United Cerebral Palsy of Illinois, Tony Paulauski from the Arc of Illinois, Rod Paterson from the Institute on Public Policy for Persons with Disabilities, Barbara Pritchard from the Campaign for Real Choice in Illinois, Jennifer Thomas from Access Living, and me, representing the Illinois Disability Activists. The latter four of us also are active members of the Community for All Coalition, a collection of cross disability organizations committed to the Disability Rights and Independent Living Movements. We each addressed how people with disabilities would feel, literally and figuratively, the negative impacts of the massive cuts in human services proposed by Governor Quinn's budget.
There was much focus placed on the budget cuts for programs aimed at individuals with developmental disabilities. All non-Medicaid grant programs are eliminated under the Governor's proposal, reducing services to people with developmental disabilities by $28,224,400 and cutting more than 700 jobs. Moreover, this budget proposes an across-the-board 2.5% rate reduction for all community-based programs. Currently, the state's total unpaid bills to providers of residential and day program services equal $4.5 billion. Even though provider should receive payment from the state within 30 days of service, the new budget proposal would implement a one and one half month payment cycle, which, given the tenuous financial situation for some providers, could cause further service reductions or complete agency closures. Overall, these proposed cuts would affect, potentially, 30,000 people annually.
Rod, Barbara, Jennifer, and I also focused on how this proposed budget does not reflect Governor Quinn's supposed commitment to the deinstitutionalization of Illinois. In fact, it reflects a philosophy diametrically opposed to moving away from institutional bias toward a stronger system of community and home-based care. Even as the Howe Developmental Center is scheduled for closure by June 30, 2010, the instances of abuse and death at that facility no longer seem to be the overarching principles behind the Governor's decision on State Operated Developmental Centers (SODCs). Closing Howe saves the state $30 million, and, still, those monies are not being redirected into the community for proper supports and services. In a shift that, for me, lacks fiscal logic and discipline, the state is investing the savings from Howe into the eight remaining SODCs. The budget increases to the other SODCs well exceed the savings achieved by closing Howe, which also seems to lack governing clarity. Several SODCs will also receive as much as $12 million in additional funding from the state. Even more disturbing is the fact that many residents and staff from Howe are being moved to existing SODCs to maintain employment levels and, presumably, resident headcount. Yet, all eight institutions, even those SODCs not receiving additional residents and staff from Howe, benefit from this proposed budget with a 5% increase in funding in a year when the total population of residents in Illinois SODCs will decrease by 3%.
These are facts we presented to the committee, and the members seemed sufficiently surprised. I, however, had reached another level of frustration. Though I admired the committee for taking the extended time to listen to our legitimate concerns, it seemed to me that we simply were reciting numbers to which they surely already had access and knowledge. I was angry, which, I should point out, is never a good frame of mind to have when addressing a committee of this kind. Nonetheless, I needed to express what I felt many had wanted to say during the entire hearing.
I abandoned my prepared remarks and spoke to the committee of responsibility and accountability. I told them that we, as advocates, were only able to do so much, and we, in fact, had done our parts in bringing these issues to the committee's attention. Now, I told them, the burden rests with them to do the right thing and act as the final champions for the causes brought before them. If the members' hearts truly lie with human services, and I believe that is the case, they must act on their beliefs and not pass a budget that carves human services into well-honed portions, which are conveniently served up for unions and other interest groups, regardless of their intent. I felt and told the committee members the time for niceties has long passed, and the current time requires action on their parts. There was no longer any room to quibble over who received the political credit or blame for beginning to correct the state's fiscal mess. As I saw it, the representatives of this committee were our last line of defense against a budget meant to excoriate human services.
On Tuesday, April 27, I testified before the Senate Appropriations 1 Committee. The chair, Senator Donne Trotter, and the other members heard budget requests from a number of smaller state agencies, but their main purpose was to hear the DHS budget request. Michelle Saddler, Secretary of DHS, testified to the proposed budget, as did the directors of the various divisions within DHS. This Senate Committee Hearing was a combination of the two hearings of the House Human Services Appropriations Committee. As opposed to representatives from DHS testifying regarding the budget in a separate hearing from advocates presenting their viewpoints, which the House committee did, the Senate committee heard testimony from both DHS and advocates on the same day. Of course, the only problem with this process is that far fewer advocates had an opportunity to testify and voice their complaints with the proposed budget. Yet, as I have already noted, logic or common sense does not always play a major role in conducting business within the General Assembly.
As Secretary Saddler pointed out to the House committee several weeks ago, she testified to the Senate committee that she did not feel the proposed budget reflected what she wanted for DHS or the many people the agency served. She and her division directors answered a myriad of questions regarding union worker salaries, desired versus necessary line items, and the overall direction the agency was taking in terms of mental health, addiction services, prevention programs, and community based services. I was pleasantly surprised at how much the senators understood about the 1999 US Supreme Court Olmstead decision, which set forth the policy that person with disabilities living in nursing homes or other institutions have the right and choice to live in the "least restrictive environment." Moreover, the legislators realized Illinois was not living up to its promise of ending institutional bias and moving more toward a community and home-based care system. In actuality, of course, Illinois, as a system of interconnecting bureaucracies, is not to blame as much as its elected officials are, and, again, to their credit, the senators understood this basic principle.
When the time came for advocates to testify, as expected, the hearing was reaching the point where the committee had to adjourn to allow members time to get to the Senate floor in time for session. Armed with that knowledge, several of us hurriedly made our way to the front of the hearing room. First, some advocates for children argued their very legitimate need for an increase in funding or, at the very least, no decrease. Then, Senator Trotter called me to the witness table.
I spoke again of the misplaced funding going to SODCs instead of community-based services and supports. Further, I highlighted Governor Quinn's agreement with AFSCME in January not to close another SODC until after June 30, 2011, at the earliest. I told the committee that I found it odd that the union needed to hire more employees at full salaries and full benefits to offset what they stated was an abundance of overtime payments. I have not yet seen any evidence that hiring more staff that are full-time would cost the state less money than paying the occasional union member overtime. Moreover, I disagree with the argument that there is a need to increase the ratio of staff to resident in SODCs higher than the current number, though, on the surface, the argument seems very logical. However, if Brian Kent, a resident of Ann Kiley Developmental Center in 2002 for just 99 days, could be abused and neglected 57 times when under one-on-one care, leading him to die from a ruptured small intestine, why is quality of care not receiving far more attention than staffing levels?
My other major concern for the committee was the idea of service parameters put forth by the Division of Rehabilitation Services (DRS) within DHS. These parameters would limit the hours available to individuals with disabilities using the Home Services Program, which pays for personal assistants to come to a person's home and provide care and assistance in areas ranging from activities of daily living to meal preparation and grocery shopping. To cover the cost of an increase in personal assistant wages as well as partial insurance for some, negotiated by SEIU, the union representing personal assistants, DRS plans to cap the hours allowed for certain activities covered by the Home Services Program. A prime but very sad example I mentioned to the committee was the cap proposed for meal preparation, eating, and cleanup. Under the Governor's budget, a person would receive 30 hours per month for meals, which easily equates to one hour per day for all three meals. If Governor Quinn was truthful when he said he wants people to consider him a human services governor, I certainly hope he did not intend these kinds of services.
The Senate committee was very obliging and refreshingly knowledgeable about many of the issues facing the disability community in Illinois. I only regret these hearings come at the end of the General Assembly’s session. Further, I regret there was not more time given to advocates to state their cases regarding what many consider these draconian cuts to human services. I equally regret more disability rights advocates were not in attendance at the Senate hearing, if only for the optics of support in numbers, for when we pull together, we do present ourselves as a massive front.
I try to be a student of politics and especially political trends. Though it may be difficult to believe, I try to do this with as little cynicism as possible. It was a remarkable moment when the Responsible Budget Coalition, a statewide collection of dozens of different groups calling for an income tax increase to balance the state's budget, amassed a huge number of people at the State Capitol to protest cuts to human services. The Coalition stated the number of people present at the rally was close to 15,000, though other estimates placed the size of the crowd at somewhere between 6,000 and 10,000 people. Regardless of the actual attendance, that kind of gathering showed the entire state that these cuts are dangerous and, potentially, life threatening, while not truly saving the state the kind of money necessary for a truly balanced budget in which sacrifice is shared.
Only the complete ideological purist or the totally uninformed would not think an income tax increase is the first step to solving Illinois' fiscal quagmire. An income tax increase, however, is not the only answer. Nor is it a panacea for the problem of overspending that has occurred for decades under both Democratic and Republican administrations and General Assemblies. Spending cuts are necessary but only if they come in a responsible and humane manner, which does not make social services the easy scapegoat as is nearly always the case. As I stated, shared sacrifice is the only way to proceed in both the areas of spending cuts and tax increases.
Of course, this rhetoric sounds quite palatable, and it may even make sense. Yet, as Illinois citizens already know, what sounds good and what makes sense do not necessarily make good politics. No one should be naïve enough to believe that a tax increase will occur before the November elections. It could be political suicide for Democrats and political hay for Republicans. Though not breaking news, what is likely to happen is that lawmakers will cobble together enough of a budget to keep the state running for six more months. Then, after the elections and during the November veto session, there could be serious discussions of a tax increase. However, that scenario also depends on the outcome of the elections and which party has control of the executive and legislative branches of state government. (Unfortunately, cynicism is never far from my mind.)
Though we face an uncertain future regarding the budget, there are victories to celebrate. HB 5152, more commonly known as "Brian's Law," passed the Illinois Senate by a vote of 54 to 1, after already passing through the Illinois House by a vote of 113 to 0, with one representative voting present. Equip for Equality deserves much of the credit for spearheading this bill through the General Assembly and making sure Brian's legacy was ensured. The new act provides for DHS to establish an independent review board to investigate deaths occurring in SODCs and mental health facilities licensed by DHS or under its jurisdiction. This is the culmination of an eight-year battle by the Kent family, who lost their son, Brian, whom I referenced earlier, to unbelievable abuse and inexplicable neglect. I truly hope, as Mr. and Mrs. Kent have steadfastly believed, that as "Brian's Law" takes effect, abuse like this becomes a memory; and if not, may justice be swift and certain, allowing the Kent family realization that Brian's death was the catalyst for change in this state. You can learn more about the story by watching the news report, "What Happened to Brian?"
On April 29, the Illinois Senate passed HB 5095 by a vote of 55 to 0. The Illinois House passed the bill with a vote of 112 to 0 on March 11. By passing in the Senate, the bill, entitled, "The Pedestrians with Disabilities Safety Act," now only awaits the Governor's signature to become law. The act guarantees that a person with a disability has the same rights as someone without a disability to the full use of streets and public places, to full and equal accommodations to common and public modes of transportation, and to accompaniment by a service or support animal, such as a guide dog. Moreover, pedestrians with disabilities who use a mobility device, a service animal, or white cane have stronger protections against persons who use cars, trucks, or other vehicles to cause injury. Any person violating this act is guilty of a Class A misdemeanor with a minimum of a $500 fine for each violation. The most important part of this legislation, in my opinion, was not simply the added protection for pedestrians with disabilities but also the bipartisanship with which the bill passed. Representative Tom Cross, the Republican leader in the Illinois House, sponsored this bill and carried it to fruition. The Tri-County Area Disability Activists, based in Joliet, also provided major support from both the political and advocacy perspectives, and that advocacy group deserves equal recognition.
There is much more happening than I have time to post on the blog at this time. Nevertheless, I will update the managed care situation as soon as possible, and I hope that will be in the next day or two. Even after the General Assembly adjourns, there will be much more for all of us to do. There likely will only be a temporary budget in place, which means this fight is far from finished. When your legislators return home to their districts, tell them what you think of the work they did. Give them a job performance evaluation. If there is only a temporary budget or if the worst-case scenario happens and the proposed budget cuts become reality, express your frustration and make them understand your perspective. Be civil and respectful, since it is very unlikely your representative or senator actually cast a deciding vote on any type of budget proposals. Yet, it is your right to articulate your viewpoints, even if your legislators disagree. Whoever they are and of whichever party, they still work for you. As a citizen, you have the power of the vote, the pen, and the podium. In other words, speak your mind, write letters, and send emails. You have the right to be heard, and if you do not use that right, we, as a society, are weaker for it.
As I look back, the committees in the House and Senate were not our last line of defense. In reality, we are that line, and we must hold it. John Gardner wrote, “The citizen can bring our political and governmental institutions back to life, make them responsive and accountable, and keep them honest. No one else can.” These are not mere words. This is a call to action.
