A Testimony and a Call to Action from the Arc

(On Tuesday, November 16, I had the opportunity to testify before the Governor's Healthcare Reform Implementation Council. The members of the Council are: Michael Gelder, Chair, Senior Health Policy Advisor, Governor Pat Quinn, Julie Hamos, Vice Chair, Director, Department of Healthcare & Family Services,
Michael McRaith, Vice Chair, Director, Department of Insurance,
Dr. Damon Arnold, Director, Department of Public Health (though Assistant Director Teresa Garate represented the department on this day),
Charles Johnson, Director, Department on Aging,
Grace Hong-Duffin, Acting Secretary, Department of Human Services,
Laura Zaremba, Director, Office of Health Information Technology,
James Sledge, Director, Central Management Services, and
David Vaught, Director, Office of Management & Budget.

According to the Healthcare Reform in Illinois Website, "Governor Pat Quinn signed Executive Order #10-12 on July 29th, 2010, to create the Illinois Health Care Reform Implementation Council. The Council will help the state implement the health care reforms contained in the federal Affordable Care Act (ACA).

Implementation of the ACA will improve the health of residents throughout Illinois by increasing access to health care, reducing treatment disparities, controlling costs, and improving the affordability, quality and effectiveness of health care.

The Council will make recommendations to assist the state to: establish a health insurance exchange and other consumer protection reforms; reform Medicaid; assure high quality care; identify federal grants and other non-governmental funding sources; and foster the widespread adoption of electronic medical records.

The council will submit its first report to Governor Quinn by December 31st, 2010, followed by periodic reports on the implementation of its recommendations."

This particular meeting focused on Medicaid reform and addressing Illinois' Medicaid system, as it moves forward under the new healthcare reform law. The Council wanted people to offer tangible recommendations concerning changing and improving the current Medicaid program in Illinois. I guarantee my testimony broke no new ground, as it focused primarily on oversight of the Medicaid managed care program in Illinois and providing more home and community-based services instead of funneling more money to institutions and nursing homes. However, since many people may not have heard about the hearing nor had a chance to attend, I thought I would provide my written and submitted testimony for you to read, critique, or just delete as you see fit.

After the testimony, I also included something far more important. Tony Paulauski from The Arc of Illinois sent out an appeal for all of us to contact our local legislators, specifically Illinois State House Representatives, about a possible end of year vote on an income tax increase and sales tax expansion. A suggested script and further information is included in Tony's message. I apologize if I am sending you yet another copy of Tony's email. I simply think it is extremely important to spread the word as much as possible.)

The Governor's Healthcare Reform Implementation Council ACA Medicaid Reform Testimony

The Affordable Care Act (ACA) is both a great boon and a great strain to state government, particularly for Illinois. As the state faces high unemployment rates and nearly a $14 billion deficit, allowing hundreds of thousands more Illinoisans to receive Medicaid assistance is a great advantage for people with low incomes as well as people with disabilities. The unemployment rate within the disability community in Illinois hovers around seventy percent, and this has been the norm long before our current economic downturn. Combining that fact with higher unemployment among the nondisabled community adds a great deal of stress to an already overburdened healthcare system.

The other, possibly even more daunting situation facing Illinois government is the extraordinarily high institutionalization rate for people with disabilities in the state. Though advocacy efforts have attempted to change this mindset over the years, Illinois still ranks near the bottom of all states in the country in its use of state operated developmental centers (SODCs), nursing homes, and large ICF/DD. Illinois ranks 51st in the nation when it comes to spending for small community living opportunities for people with disabilities. The state ranks 47th nationwide in community services spending but ranks an inglorious fifth in the country on spending for SODCs. Illinois annually throws millions of dollars at state run institutions, spending on average $166,000 per year on each resident, when the cost of providing services for persons living in the community averages closer to $50,000 annually.

Some may ask what these specific figures have to do with the ACA. My response is that when asked what changes Illinois needs to make to improve the quality of long-term care in the state, I believe we should stop throwing good money after bad. The ACA is pushing states in the direction of less reliance on institutionalization and much more emphasis on home and community-based services. Illinois needs that exact kind of change to guarantee the implementation of healthcare reform. For decades, the state has taken the easy road of institutionalization to bypass the difficult decisions that come with integrating people with disabilities into the community. The ACA has done what Illinois legislators and policymakers have ignored far too long, and that is forcing the state's hand into acknowledging what is a higher priority—institutionalizing people with disabilities because that seems the easier solution or working more diligently to allow people the choice of moving into the community.
Choice is truly the central theme of all the questions asked by this Council. The independent living philosophy values individual choice foremost in the lives of people with disabilities. The choice to live in the community is fundamental to an individual's ongoing overall health. The choice of doctors and specialists who provide care to people with disabilities is equally critical in the overarching theme of healthcare reform. As long as Illinois retains the mindset that SODCs provide adequate living arrangements for people with disabilities, the state will not move forward. If Medicaid managed care becomes the norm in Illinois with HMOs potentially putting profits before people, the state will not move forward. There are tangible ways to assure the letter and spirit of the ACA reach fulfillment in this state, and that comes through putting consumer choice ahead of bureaucracy, policy, profit, and especially politics.

No one with knowledge of the situation would say it is reasonable to close all Illinois' SODCs immediately. Transition takes time, but it must begin before it can reach any semblance of fruition. States across the country have eliminated institutions completely by establishing group homes and CILAs in the heart of the community. Before Illinois can take the actions the ACA has put forth for it, regarding more home and community-based services, its elected officials must focus on establishing the necessary community services and supports. Therefore, a tangible change in the approach Illinois takes to long-term care is providing more accessible and affordable housing. You cannot expect people to move out of institutions or even contemplate such a move, if they feel they have nowhere to go once they are "on the outside." A recent study from the University of Colorado showed Illinois ranks worst in the nation when it comes to housing for people with disabilities. A result like this is unacceptable. An effort to change this culture and provide adequate housing would require an initial outlay of several millions of dollars, but it would also create jobs, provide housing, and boost an otherwise sagging Illinois economy. Moreover, studies have shown people who live in the communities as opposed to institutions have better overall health outcomes, including mental health.

There is also a tangible way to guarantee transparency and consumer choice in what increasingly seems like a statewide Medicaid managed care system in the future. First, people with disabilities and seniors must be involved in the contract negotiation process to make their concerns heard and force both the state and HMOs to act in good faith when implementing consumer choice-driven aspects of the contracts. However, advocacy and the presence of advocates must not end when the contracts are signed. There must be an independent oversight committee, comprised of advocates, providers, and other interested and astute individuals, to act as a watchdog over both the state and the HMOs. There are too many examples from numerous other states delineating how Medicaid managed care has worked as a complete failure with HMOs receiving far too much profit and the states providing far too little oversight. Illinois needs to avoid this trap before the system begins. There are examples to which the state can turn to avoid the pitfalls of California, Florida, and Wisconsin. Consumer choice is the key, and providing a consumer voice in the overall process of creating such a vast and uncharted system allows Illinois to show in concrete terms its commitment to better healthcare and better lives for people with disabilities.

These are only two problems and two potential solutions in the Herculean effort of implementing the ACA accurately, completely, and equitably. There is much more than can be discussed in only one hearing. However, it is essential for this Council to understand the fundamental principles behind the ideas that guide people with disabilities and the disability rights movement. Consumer choice, independence, freedom to live where you choose, and access to healthcare not mandated by sometimes unknowing insurance companies only begin to scratch the surface of the many issues people with disabilities find concerning in Illinois' current fiscal and healthcare environments. Yet, even as we bring these concerns before you, we also have hope the ACA will develop into everything the federal government intended it to be. We are now beginning to crack open the door and see what lies behind the term "healthcare reform." Now, we all must act in ways that reach the goals of the ACA and strive for means that go beyond the Act's intent into another area where integration of healthcare meets integration into the community. That is our truest and most important goal.
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The Arc of Illinois

November 18, 2010

Leaders in The Arc:

I wanted to share with you what Phil and I have been hearings as we talk to legislators and advocates about recent new revenue initiatives.

What follows is a quick draft of a package of materials we will develop for your use when talking to legislators.

You can see the urgency of this opportunity and a very short timeframe.

I know you and others will step up in this time of reduced services and major threats to children and adults with disabilities in Illinois!

Tony Paulauski

The Arc of Illinois

815-464-1832

Tuesday night, Speaker Madigan held a three hour caucus with his House members. Much of the time was spent on new revenue during the fall session. What is being considered is a 2% increase in the income tax, sales tax expansion, and further cuts. The Speaker believes that the Governors proposal does not raise enough revenue.

These increases would be used to pay off the backlog of unpaid bills to providers and would halt any new initiatives for the next two years.

The target for a possible vote would be in early January. The Speaker is calling members back to session right after the first of the New Year, adding four additional days to the legislative calendar. This is highly unusual, but during that period, a simple majority would only be necessary to pass this type of a legislative package so the window of opportunity is very short. To pass the House, 60 votes would be needed, and the Speaker will only call a vote if there are Republicans that will vote for this increase. Last time a vote for new revenue was considered, only 42 House members voted for the increase. In the Senate, 30 votes will be necessary. President Cullerton believes the Senate will support this plan because the Senate already passed a new revenue bill last spring. The Senate President wants this legislation to start in the House.

The Speaker and the President are looking to us to get bipartisan support for a tax increase.

We will need a solid 60 votes in the House for this tax bill and it must be supported by both Republicans and Democrats.

This may be our last opportunity for new revenue in Illinois.

I need you to report back to me which legislators in your area will support this tax increase and which legislators will not. I need to know that there will be a solid 60-vote roll call in the House if we are going to be successful.

Needless to say, we need to activate advocates, staff, and board members to meet with their legislators in their home offices between now and the end of December. We need their commitments.

This vote will be the most important vote for disability services and supports in recent times.


Talking Points for Legislators

Introduce yourself to the legislator and describe your affiliation/organization and its work.

1. Here is how I personally see our state’s fiscal challenges hurting people with disabilities and our community. Have individuals and their families share their stories.

(Briefly describe how budget cuts and funding delays have hurt the public services with which you are most familiar. Cite specific examples of people losing supports, jobs being cut, salaries being slashed, the more specific the example, the better!)

These are just some of the ways in which Illinoisans-children, families, seniors, people with disabilities and many others are suffering.

2. We need to do better we can no longer rely exclusively on massive cuts and long payment delays that:

Hurt disability services, schools, providers of health care and human services and public-sector businesses as well public-sector jobs

Ignore the 21,000 infants, children, and adults on the waiting list

Harm economic recovery by forcing more layoffs in non-profits

Plus, heavy borrowing only digs our budget hole deeper in the long-term

We’ve already begun work on important government reforms, but we’ve done nothing to raise desperately needed new revenues. Illinoisans needs two things to restore our state to balance and responsibility:

Additional revenue to pay-off our bills and more adequately fund vital community services.

Your leadership, to help make it happen.

4. To help put Illinois on more stable fiscal footing, will you support efforts to raise new revenue by increasing the income tax and expanding the sales-tax base to more services, before the next General Assembly convenes in January?

What if these moves were temporary?

Could you support an increase in the new General Assembly’s spring session?

Be sure to thank the legislator for his/her time.

THANK YOU for helping to support a more balanced and responsible solution to Illinois fiscal problems!

Responsible Budget Coalition

Eyes Wide Shut

(I haven't blogged recently, as I've been very busy with everything else surrounding a myriad of advocacy issues. Yet, due to the campaign season, I could not stay quiet. I realized having a blog is like having a bully pulpit, and after seeing enough political swill lately to make me sick, I decided it was time to say something.)

I love politics, and I am sick of it. Do not misunderstand me. I still love nearly everything about it, except the lies, which many would say define politics. Yet, I mean the lies that go beyond the pale and make my blood boil. If you have been at all politically aware the last six months, you know exactly what I mean.

I make no bones about being a self-avowed liberal Democrat. Further, I am not going to pretend that this blog post is going to be completely objective—or even remotely close to objective. I am not writing this in my capacity as president of the Springfield Area Disability Activists but just as a citizen. This is my time to vent and get a few things off my chest.

First, let me say as a disability rights advocate, I have not always been happy with Governor Quinn's policy decisions on disability issues. For instance, Medicaid managed care for long-term care services, such as personal assistants, durable medical equipment, and a litany of other issues, is not a good fit for people with disabilities. This is especially true when a program like this is rushed and not given the complete thought and understanding needed to have a chance of success. The governor's office needed to include advocates at the outset of any discussions of this type.

Deep and almost paralyzing budget cuts put forward by the governor's office could seriously harm people with disabilities in ways we still cannot even begin to measure. Home Services, a program within the Division of Rehabilitation Services, designed to keep people with disabilities living independently in their own homes, now allows only 18 hours per month per outside the home assistance. That means a personal assistant can only accompany someone with a disability to the doctor, to the grocery store, to the laundromat, to church, or simply to the park for a grand total of 40 minutes a day during a 30-day month. Try going to a typical doctor's appointment, shopping for groceries for the week, and making a deposit at the bank in 40 minutes.

You can see I disagree with some of what the governor's office put forth as state regulations or policies for people with disabilities. Yet, I also realize there are people in that office who actually want to do what is in the best interest for people with disabilities in this state. There are people like Michelle Saddler, the Governor's Chief of Staff, Ryan Croke, one of the Governor's Deputy Chiefs of Staff, Jim Parker from the Department of Health and Family Services, and Rob Kilbury, Director of the Division of Rehabilitation Services, who are trying to do the right thing. Even though I do not agree with everything that they do or say because of bureaucracy, I will not minimize their efforts to make a difference or their willingness to listen and, sometimes, make the right changes.

There is absolutely no doubt in my mind things have to change in this state. Those we elect to govern must do just that. I just described I did not like some of the policies coming from the governor's office in the last few months, but no one who pays attention to Illinois politics can lay the blame for our current economic situation or some of the remedies for it squarely at the governor's door. Last May, the General Assembly rushed out of Springfield with a joke of a budget that they sent to Governor Quinn. Our state legislators shirked their responsibility of developing a balanced budget and punted the ball to the governor, essentially saying that they had no idea what to do and wanted no responsibility for the outcome. They dropped the hot potato outside the governor's mansion and made a hasty retreat to the safety of their home districts. That is the truth, which many people neglect to state.

It is easy to blame Quinn for all this mess. In fact, State Senator Bill Brady, his opponent, does it all the time in campaign ads and speeches he gives before angry, hard right wing crowds, hungry for red meat. Brady gives it to them by the plateful and make sure his campaign machine keeps cranking out more sausage to feed the masses. Yet, we are not talking about loaves and fishes here. This is rhetoric from Brady accusing Quinn of wanting to raise taxes on everyone in the state, ship jobs across or out of the country, and spend money the way, well, the U.S. Congress did when George W. Bush was president. It is indeed harsh talk but lacking quite a bit in terms of truthfulness.

Brady seems to assume the overall national recession we are experiencing, though that experience is shared globally, started right here in Illinois. More than that, he would have you believe Quinn started the recession personally. Following the logic of the Brady campaign, Quinn wants to raise taxes, drive us deeper into debt, and make this state the laughingstock of the country, since he would say that is what Democrats do regardless of the economic circumstances.

The problem with that argument is that the most well-known economists and policymakers across the state and throughout the U.S. agree that Illinois cannot continue on its current path without increasing revenues. Yes, that means all of us—citizens and politicians alike—need to close our collective eyes and noses, take a big dose of medicine, and accept an income tax increase. Our elected officials have tried every trick they can muster to avoid raising taxes, even though it is the most rational and efficient means of beginning to eliminate the state's mounting deficit. It does not sit well with most people, and it is not a politically endearing thing to do. No one ever wants to hear about needing to pay more taxes. There will never be a good time to broach the subject, but we have to accept the fact that decades of fiscal mismanagement in this state leave us no other viable option.

However, instead of acknowledging the fact that Illinois needs more revenue, Brady has consistently said he would cut spending 10% across-the-board. Just to drive home that point, Brady's position means every agency, according to the senator, would be chopped by one tenth, if Brady were able to pass a budget like that. He envisions that would save enough money to pay down on the deficit, and he thinks more revenue would come to the state when he creates thousands of private sector jobs, thereby infusing more tax revenue into the state. Aside from the obvious question of how he would create thousands of jobs, there is still the proverbial fly in Brady's ointment.

Without getting into too many numbers, Brady is basing his cuts on a $53 billion Illinois budget. According to  Crain's Chicago Business, which is typically a more fiscally conservative publication, the 10% cuts Brady wants actually need to be based on a budget closer to $30 billion, once you eliminate, among other monies, $14 billion in federal funding for Medicaid. These cuts would have to be much bigger and more extensive because there are federal funds, debt service, special-program trust funds, and other pots of money that are exempt from cuts by the state government, especially the governor. Essentially, that means Brady's 10% across-the-board cuts to all different agencies suddenly become 20% cuts to find the kind of savings to decrease the state's deficit as much as he proposes. That deficit, by the way, according to this article, is much closer to $7 billion than $5 million. Even though Brady will not admit these facts openly, he did say the cuts could exceed 10% and that he never promised such cuts would be easy. Yet, for who would any of these cuts be easy?

Now, I promised myself when I began writing a blog post like this one that I would not go on a tangent of "political speak." I fear I may have done that, but I suppose it comes with the terrain. I began this post by talking about lies and the fact that I found them particularly nauseating in this election cycle. This is absolutely the case, at least, for me. Of course, each side and each party tell lies, and it happens every two years without fail. The attacks get more brutal, the lies become more slanderous, and the issues get lost in all the propaganda. That leaves the voter, which, unfortunately, is usually under-informed, to figure out who is telling lies, who is telling the truth, and how to pick between the two. That is not an easy task, especially when there are movements and groups mingling through the political landscape, trying to distort every Democratic claim, while upholding every Republican one.

One of those movements is the Tea Party, a largely undefined and loosely knit group of people claiming to want all politicians to adhere strictly to the Constitution. It does not consist of grassroots members who are angry with the government and want to vote out all incumbents to stop just short of complete revolution, as they would have you believe. This is merely a shell group for large corporations, both domestic and foreign, to fund with millions of dollars and give the public the appearance of angry citizens, intent on taking their country back. Ironically, though, Tea Party loyalists never say from what they want to save the country, except underground Socialists and Nazis, regulations on banks and Wall Street firms, and big government intrusion into their lives with programs they disdain, such as Medicare, even as they refuse to give up the benefits.

This is the movement pushing the conservative agenda in this midterm election cycle, and some would say the people behind the curtain have spun the message so much that it is now out of control. This is the same movement, which is supporting Brady. This is the same movement, which Brady has embraced. This is the same movement, which many would say—and I am among them—campaigns on fear, anger, hopelessness, and a sense of revolution bordering on violence. Brady has the Tea Party's support, and it has his obligation to govern in a way that perpetuates fear and anger, even if neither side will admit this is the case.

Understand that I am not a lockstep Democrat. I disagree with my party as much as I agree with it. In fact, there are times I get so infuriated by what is happening or not happening in state or national politics that I must turn off the noise box and detach myself for a while. I do not like the idea that, in my opinion, the Illinois House Speaker is far more effective at trying to pass legislation when he has a Republican governor to use as a foil. I do not like that the Democratic Party, when they controlled both branches of state government, could not seem to work together because of infighting and a bit of backstabbing. Yet, even saying that, I believe in the principles of the Democratic Party, and I believe it works for the best interest of working men and women, people with disabilities, and people society has forgotten. I can say honestly and without a doubt that I do not believe those same things about the Republican Party.

I have written what seems like a very rambling blog post. It did not seem very consistent, coherent, or even that useful. If I ever try to write anything, I always try to have it make sense, be as understandable as it can be, and have some foundation in facts and not just my opinion. I cannot say this is my best effort in those regards. Thus, I will not keep writing just to hope for a better outcome. Instead, I will leave you with just a few more thoughts.

When you vote tomorrow, consider the implications that vote will have for the next four or six years, depending on the race. Vote with your head and not your heart. I understand why many people want to support Rich Whitney, the Green Party candidate. Many view it as a protest vote, and I know Mr. Whitney has many progressive ideas. I also know that tomorrow there is no chance he is going to become the next governor of Illinois. As a liberal, I find it very difficult to advise anyone not to throw support behind the most progressive candidate. Still, I also consider myself a pragmatist, and I know our two-party system is not going anywhere anytime soon.

I believe if you want to protest, use your vote to elect someone who might actually hear your protests and act on them. Pat Quinn has been an advocate throughout most of his public life. It is a fact you cannot govern as an advocate, but it also does not mean a person loses his or her fire for change and advocacy simply because he or she is now in a position to govern. I believe in our current governor's ability to affect change, bring different groups together, and act on the principles he has shown in the past, such as integrity, reform, bucking the status quo, and not accepting the word "no" as the only solution.

I believe Brady will move Illinois back into a time more reminiscent of the 1950s than the 2010s. We cannot go there. We do not have time to dig our way back out of that mindset. If the disability community is going to make any strides in the state in the next four years, it is not going to happen with Brady as governor. He will slash programs that are vital to all of us. He will redirect spending to tax cuts for the wealthy and away from social services that are just beginning to see the light of day. We must not turn back.

Vote tomorrow. As Justin Dart said, "Vote as if your life depends on it, because it does." I know we hear that and read that every two years, but this time, the stakes are too high to ignore it. For too many years, Illinois' elected officials and its citizens have stumbled around the state, walking into walls because we would rather look at our feet instead of knowing that our state government is not working for us. Unless we open our eyes, wade through the river of lies, and vote in our best interests, the walls against which we have been perpetually beating our heads will start to close in around us. I hope that tomorrow we open our eyes, decide to move forward, and reload for the most intense advocacy we have ever known. This is not the time for compromise or apathy. This is the time for action, determination, and rekindling the gleam in our eyes for independence and equality. Just vote!