I'm Not Saying, I'm Just Saying

Springfield Mayoral Race: The Disability Vote

2011-02-22T06:21:00.000-06:00

Today is Election Day, and it is not just in Chicago. The Springfield mayoral primary is also today, February 22. There are eight candidates running for the four ballot positions for the general election on April 5. Though there are some front-runners, as in Chicago, the race is still wide open. Since four names will appear on the ballot, a mere plurality of the vote is all one candidate needs to become Springfield's next Mayor.

Several disability rights groups and service providers put together a questionnaire regarding disability issues pertinent to the Springfield area. Each candidate received a copy of the questionnaire and a deadline to return it. Unfortunately, only three candidates returned the form. With only four questions, it would seem all the candidates could have found the time to fill out and return the questionnaire. Yet, to their credit, Mike Houston, Sheila Stocks-Smith, and Michael Farmer answered all the questions and returned the questionnaire in a timely manner. The five other candidates—Mike Coffey, Jr., Frank Kunz, William McCarty, John Thomas, and Mario Ingoglia—did not return the form and, therefore, provided no insight on their views regarding the disability community in the Springfield area.

While some people may not receive this information before voting in the primary, it is still very important to get these responses to the public and media alike. On March 26, at the First Presbyterian Church in Springfield, the same groups that supported the questionnaire will host a mayoral forum for the four candidates who won the primary and are on the ballot for the general election. As the time approaches, I will resend this information, if appropriate, along with any other information regarding disability issues put forth by the candidates.

I want to acknowledge Pete Roberts, the Executive Director of the Springfield Center for Independent Living (SCIL) for doing all the legwork for this activity. He and his staff made sure that all the candidates received the questionnaire and instructions on how to fill it out and where to send it. Pete deserves much of the credit for making sure this venture came together.

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Springfield Americans with Disabilities Vote

The following Mayoral Candidates did not respond to this questionnaire:
Mario Ingoglia, William D. McCarty, Frank Kunz, Mike Coffey, Jr., John G. Thomas.

1. Since 1985 Springfield has had a Disabilities Commission. Citizens with disabilities have been disappointed that the Commission has not been effective in addressing the concerns of citizens with disabilities and working with the city council to address and resolve such concerns.

As Mayor, what would you do to strengthen the Commission and hold it accountable?

Mike Houston:

I served as Mayor from 1979 to 1987 and proudly established the Disabilities Commission. Now decades later, although progress has been made, there still is a long way to go to meet the needs of the disability community. I would commit to attending your meetings as I am available or having an assistant from my office attend on a regular basis. My priority is to have open communications with the members of the Commission. I would solicit your suggestions for appointments to the Commission and maintain a full complement of ten appointees. Given the charge of the Disabilities Commission, I would request the Commission to prepare an annual report outlining the progress that is being made on making municipal facilities accessible. While the Commission deals with both public and private facilities, the City of Springfield needs to set an example for other governmental and private organizations.

Sheila Stocks-Smith:

I agree that Committees and Councils may not be functioning to their highest potential. If we seek citizen input through this venue, we need to make sure those recommendations are heard and acted upon. My administration will review all city boards and commissions and restructure as necessary, not only to ensure concrete outcomes, but to ensure diverse perspectives are represented across all boards and commissions.

Michael J. Farmer:

First, I would review the recent activities of the Commission and speak with each member of that Commission. If there is a need to an appoint individual(s) to the Commission who may enhance the awareness and help address the concerns expressed by citizens with disabilities, then this definitely should occur. I would review the Commission’s Transition Plan and work with the appointed city liaison to report specific concerns and any recommendations to resolve those concerns. Obviously, the city and the Commission will seek the advice of the Springfield Center for Independent Living (SCIL) to assist in an adequate and affordable resolution of identified concerns. As Mayor, I would request that all identified concerns and actions taken be shared with me on a regular basis to ensure the city acts upon the resolved concerns. It should be noted that the Office of Planning and Economic Development works closely with SCIL and utilized Community Development Block Grant funds for several ADA related projects.

2. Springfield has never designated a full-time Americans with Disabilities Act (ADA) Coordinator, who would be responsible on a daily basis for assuring that the city is in compliance with all appropriate provisions of the ADA including the Transition Plan.

Would you commit to appointing a full-time ADA Coordinator?

Mike Houston:

No, I would not make commitment. Given the city’s financial condition I do not see the possibility of adding such a position. We need to assess how the time of the current part-time ADA Coordinator is being used to determine if it can be used more effectively and if it is adequate.

Sheila Stocks-Smith:

I believe that my administration will provide the end result wanted by Springfieldians with Disabilities. However, I cannot promise a full-time ADA Coordinator until I review all positions within city government in light of the city’s fiscal problems.

Michael J. Farmer:

First, I believe a full-time ADA Coordinator would enhance our city’s ability to work with persons with disabilities and add to their overall quality of life. However, because of the current budget situation, the appointment of a full-time ADA Coordinator is unfortunately not feasible. That said, I see no reason why a current city employee(s) cannot increase his/her participation with the Commission and the SCIL to increase his/her awareness of the ADA and ADAA. If increased communication and awareness of ADA and ADAA requirements occur within the city and city council on a regular basis, the need for a full-time ADA Coordinator may not be necessary. The city could then spend more time focusing on the resolution of current and future concerns of citizens with disabilities.

3. In December 2010 the U.S. Department of Labor, Bureau of Labor Statistics released disability employment statistics showing the percentage of people with disabilities in the labor force was 21.0. The percentage of people with no disability in the labor force is 69.6. The unemployment rate for those with disabilities is 14.3 percent compared to 8.9 percent for people with no disability (see www.disability.gov).

As Mayor, what will you do to ensure that, when promoting diversity in the city workforce, persons with disabilities are recognized as a desirable and viable minority resource and recruited and hired as such?

Mike Houston:

The City Code Chapter 36, Section 36.02 and Rules of the Springfield Civil Service Commission Rule 1.8 both contain the following language, “…or disability unrelated to the person’s ability to perform the duties of a particular position except where a bona fide occupational qualifications exist.” The City Code stipulates that persons referred to above are to be considered for city employment and they would be. I intend to hire people based on their qualifications and experience and would consider individuals with disabilities. Women, minorities, and people with disabilities will be encouraged to apply for positions.

Sheila Stocks-Smith:

The city’s workforce needs to reflect the people it serves. Diversity includes race, gender, disabilities, but also ability level, religion, age, sexual orientation, geography, ideology and more. Springfield is best served through inclusive policies and practices and I will model these standards by ensuring diversity among my staff and department directors. Achieving a diverse workforce will be a consideration in all new hires; efforts to promote city employment to underrepresented populations will be ongoing. In addition, my career has been spent working on community and educational issues, and I will also work to assure that people with disabilities also receive the workforce training they need to compete for the job sectors we will be fighting to grow.

Michael J. Farmer:

This question again speaks to the issue of awareness within the city workforce and the general population. As Mayor, I will see that the Commission’s Transition Plan is shared with the appropriate members of the city workforce to ensure that persons with disabilities are recognized as a viable resource for the city and businesses. While promoting diversity in the city workforce is important, the Mayor is in a unique position to promote hiring persons with disabilities with the Springfield business community. Organizations such as SCIL, SPARC, Hope School and UCP can assist in that effort as the identified business needs emerge, e.g. accommodation recommendations, janitorial services, shredding services.

4. Given the complexity of disability issues and the apparent lack of understanding among city employees and council members, would you, as Springfield Mayor, support the implementation of disability awareness/sensitivity training for all city employees and council members?

Mike Houston:

Absolutely, I would support the inclusion of disability issues as part of the existing orientation program. While I am not familiar with the specifics of the employee orientation or ongoing diversity awareness/sensitivity training, I believe it should include disabilities issues.

Sheila Stocks-Smith:

My administration will review employee training and ensure that awareness and sensitivity toward people with disabilities is included.

Michael J. Farmer:

Yes, I would definitely support and require the continuation of disability awareness/sensitivity training for all city employees. I would request that the council members participate in this training as well. It is important to note that all city employees were required to participate in sensitivity training last year, which included disability awareness. However, there may still be a need to review the information provided to city employees on disability awareness and offer more detailed information as recommended by the Disability Commission and/or SCIL. As Mayor, all new employees and newly promoted employees will be required to attend disability awareness/sensitivity training as part of their overall employee orientation. On a regular basis, the city workforce will be required to attend this training so current information on disability legislation, such as Rosa’s Law, awareness and best practices can be shared as persons with intellectual or cognitive disabilities or mental health challenges are integrated into the city and/or business community workforce.

Death by a Thousand Cuts

2011-02-15T02:03:00.000-06:00

(What follows is a series of action alerts from CCDI, Illinois Works for the Future, and payourbills.illinois.gov, as well as fact sheets concerning Senate Bill 3 (SB 3) and what impact human services cuts would have on the disability community in Illinois. As usual, I offer a brief commentary before the alerts and description of cuts. Many of you may have already seen these alerts and responded to them. My goal is to reach others who have not had that opportunity and remind everyone that one phone call or one email is only the beginning and not the end of our efforts.)

Unfortunately, most of us have played this game before. Most of us have fought this battle either last year or some other time in the past. The problem, of course, is that the war never seems to end, and some of us get battle fatigue. No, this is definitely not the first time we have been down this road. We know we have months of work ahead of us, and we cannot begin to pull back now.

If anything I just said seems confusing, you only need to start paying attention to the Illinois state budget process. The Governor will lay out his proposed budget for the next fiscal year on Wednesday, February 16, during his budget address before the General Assembly. The first thing to remember is that this is merely a proposed budget and not the end result on which legislators will vote in May. We have much more gnashing of teeth before we reach that point. That said, many disability rights advocates are upset with several of the Governor's proposals.

Every year, regardless of administration, political party, constituencies, or makeup of the legislature, there seems to be a clarion call for budget cuts. Legislators and the Governor's office rush to find ways to slash "unnecessary" spending from the state's budget. This year is no different and, in fact, offers extra political pressure to make those kinds of cuts. Typically, the most drastic cuts come from human and social services, since legislators feel those are the easiest areas to cut. The constituencies usually receiving these services are the state's "most vulnerable" populations, which are defined as seniors, people with disabilities, single parents, and individuals living in poverty. Are these groups the "most vulnerable" people living in Illinois? That point is debatable, but the fact that most legislators feel that these citizens have no political voice is far more telling than if they were cutting benefits for union members.

It is time for this political mindset to end. People with disabilities, seniors, and individuals with low incomes have voices and advocates. We are not silent, and we are not pleased when we see our benefits reduced or taken completely from us before any other state agency or program is ever considered. We want what we have earned or been promised. This is not asking for handouts from the state government. This is reaping the rewards for decades of work or receiving opportunities to become productive members of society. Whether the fact is acknowledged or not, these "most vulnerable" populations continue to vote, continue to voice their opinions, and continue to make their presence felt in the state capitol.

I understand how easy it is to lose that "fire in the belly." It seems we end up fighting these battles every year. We all get tired, especially when we hear that, yet again, we are the targets of cuts by the state government and, in many cases, the federal government as well. Just when we think we dodged a barrage of draconian cuts to our very quality of life, we find ourselves squarely in the crosshairs again. It almost seems we are in perpetual movement just to avoid the government ax.

Yet, in many ways, that is the nature of advocacy. That is not to say disability rights advocates always find themselves seeking hiding places and fearing government cuts. However, it does mean this is a constant struggle, and just when we feel that we have won a major battle, another one rises over the horizon. Advocates are not weak at heart, and we definitely do not fall under the rubric of vulnerable. We fight these constant battles because we believe our vision of society is just and fair. We fight because we want independence and equality. We fight because no one else will and, sometimes, because no one else can. You cannot present yourself as a voice for the "most vulnerable" in our society, unless you can relate to the struggles they face. Advocates do that every day, and we will continue to do that, regardless of how many times we feel outnumbered or overwhelmed.

This is only the beginning of the Illinois political season. At times, it will seem like a carnival or circus. At other times, it will seem like an arena full of menacing lions. Yet, in the end, it is simply people arguing their case against other people who feel equally justified in their perspective. The point is we can never lose sight that this is not an all-out war, and not everyone is against us. We all must be smart in picking our battles and making sure we are unified in our approach. We have the numbers, and we are on the right side of the argument. We only need to stand together and make our case loudly and consistently.

Cutting the budget to the Department of Human Services (DHS) by as much as $250 million is wrong on many levels. We saw this same scenario last year, when Home Services in the Division of Rehabilitation Services (DRS) faced service parameters and hourly cuts and the Division of Mental Health (DMH) experienced horrendous cuts to services. People suffered because of these cuts, and, yet, Illinois still found itself with a record deficit. Do we really need to reenact the same play again? It seems the ending remains the same.

However, unlike most years, the General Assembly finds itself with answers it usually lacks. In this session, there is a chance to pass SB 3. This borrowing bill would let the state pay its debts immediately and prevent vendors and providers from taking unnecessary bankruptcy because of backlogs of unpaid state bills. It would create jobs, and it would not cause the government to go bankrupt itself when paying back the loan. The information about this bill is located further down in this post. Still, it seems quite clear that when there is an alternative to slashing programs desperately needed by people across the state, our legislators should take that opportunity and make it a reality. Is this what they call a "no-brainer?" I think it is about as close as we can get.

Read the alerts below. If necessary, read them again. Call the numbers, and send the emails. If necessary, do it again. Make our voices heard. Let's put the automatic reaction of cutting social services in the backs of legislators' minds. Let's be proactive instead of reactive. Let's all take a deep breath and dive into advocacy again.

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Support Senate Bill 3 (Pay Our Bills) Fact Sheet

To stabilize the budget and grow jobs, Illinois must pay its bills, while continuing to improve education, health care, human services, and public safety.

The increased revenues passed by the General Assembly and signed into law this month are only one half of the package. We also need Senate Bill 3 to alleviate current burdens on state vendors, health care organizations, and social service organizations.

Debt restructuring is similar to consolidating credit card or loans. Senate Bill 3 allows us to pay our bills in a lump sum and save money, while we also have dedicated revenue streams to pay it back:

• The lender will pay all of Illinois bills now;

• Illinois will repay the lender over a period of 14 years;

• Repayment will come from the 0.5% of the revenue increase specifically set aside for
this plan.

This is not ‘new borrowing.' This is a strategic restructuring to pay down debts already owed by the State of Illinois.

Why Restructure Our Existing Debt?

Pay Invoices Now ‐ Illinois takes (on average) six months to pay an invoice owed to a vendor, and eight months for group insurance repayment. Debt restructuring would allow service providers to be paid now, rather than in 2012.

Save 50,000 Jobs Annually – By failing to pay its bills, Illinois is costing itself jobs. Because of late payments, vendors, schools, and social service agencies are having trouble-making payroll, are laying off employees, and even closing their doors. By failing to pay its bills, Illinois is costing itself about 50,000 jobs annually (as well as their payroll taxes).

$8.7 Billion into the Economy – Debt restructuring would cause an $8.7 billion influx of funds into Illinois’ economy. This translates into jobs, as well as increased state and local revenues through payroll and sales taxes.

Save Money with Prompt Payment – Illinois is forced to pay penalties on late payments to vendors. In addition, Illinois’ failure to pay its bills has caused vendors to cancel contracts, force contract re‐negotiation at higher prices, or bid high to offset late payments. Prompt payment would encourage competitive bidding, saving millions annually.

Bolster Our Business Reputation ‐ Illinois’ fiscal woes have resulted in a bad reputation in the business community. Our continued failure to meet our obligations makes Illinois a risky prospect for business relocation/startup, especially a company that might do business with the State of Illinois.

Bond Ratings – Bond rating agencies have applauded our move to raise revenues, but rating agencies like Moody’s have called for a debt restructuring plan before they would upgrade our bond rating. Better bond ratings means Illinois can find lower interest rates, saving us hundreds of millions in higher interest costs.

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***HOME SERVICES CUTS ACTION ALERT***

The Illinois Governor’s office is reportedly considering $250 million in budget cuts to the Department of Human Services (DHS). This means they are looking at cuts to all services offered by DHS, INCLUDING HOME SERVICES. They are thinking about limiting the number of hours of home services people receive, so the state can save money.

YOU can take action TODAY. Many people with disabilities depend on home services to be able to live at home in their communities. We must speak up now and let the Governor’s office know we care about home services. They have not yet made a final decision, so now is the time to speak up!

Below are phone numbers and emails you can use to get in touch with the Governor’s office. When you call or write, tell them your name, where you live, your connection to the disability community, and why home services should not be cut. Make sure they know that home services SAVE the state money!

Please contact:

Governor Quinn, (217) 782-0244 (Springfield) or (312) 814-2121 (Chicago), or email him at http://www2.illinois.gov/gov/Pages/ContacttheGovernor.aspx

David Vaught, Director of the Office of Management and Budget (OMB), (217) 782-4520 or gomb@illinois.gov

OMB’s Health Care and Human Services division, (217) 782-3105

DHS Secretary Michelle Saddler, (312) 793-1547 (Chicago) or (217) 557-1601 (Springfield), or michelle.saddler@illinois.gov (Please remember that Michelle really wants to know people’s personal home services stories so writing her with your story is a very good idea---she can best advocate for us if she has good stories from our people.)

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CALL/EMAIL YOUR STATE LEGISLATORS TODAY!

SUPPORT SB 3

The Illinois legislature is currently considering SB 3, which is a bill to restructure Illinois’ debt. The state government put out the following fact sheet on SB 3 with the details: https://www2.illinois.gov/gov/payourbills/Documents/Fact%20Sheet.pdf. The bill would pay outstanding debts to state vendors and take advantage of the recent tax increase. It is very important to let our state legislators know that we want the to support SB 3—especially Republican leadership.

Take action and support every person with a disability in the state of Illinois who uses community-based services. This bill matters to every CIL, every clinic, and every provider that uses state funds to keep people with disabilities in the community.

TAKE ACTION

Once more, please pick up your phone today to make a call, or use your computer to send an email. The sooner, the better as this bill is in motion.

Please contact your own state senator and state representative (see http://www.elections.il.gov/districtlocator/districtofficialsearchbyaddress.aspx to look them up) or go to http://www.ccdionline.org/ and click on "legislative action center.” Also, please contact some of the Republican leaders in the list below. They are key to passing SB 3.

The message is simple: SAVE ILLINOIS SOCIAL SERVICES BY SIGNING ON TO SB 3!

Key Senate Republican Leaders:

Senator Christine Radogno: (217) 782-9407, (630) 243-0800, cradogno@sbcglobal.net

Senator Dale Righter: (217) 782-6674, (217) 235-6033, http://www.dalerighter.com/

Senator J. Bradley Burzynski: (217) 782-1977, (815) 895-6318, senatorbrad@frontier.com

Senator John O. Jones: (217) 782-0471, (618) 242-9511, http://jones.senategop.org/

Senator David Luechtefeld: (217) 782-8137, (618) 243-9014, http://www.luechtefeld.senategop.org/

Senator Dave Syverson: (217) 782-5413, (815) 987-7555, info@senatordavesyverson.com

Senator Matt Murphy: (217) 782-4471, (847) 776-1490, SenatorMattMurphy@gmail.com

Senator Dale Risinger: (217) 782-1942, (309) 693-4921, senatorrisinger@yahoo.com

Key House Republican Leaders:

Representative Tom Cross: (217) 782-1331, (815) 254-0000 tom@tomcross.com

Representative David Leitch: (217) 782-8108, (309) 690-7373, davidleitch@ameritech.net

Representative Tim Schmitz: (217) 782-5457, (630) 845-9590, info@timschmitz.org

Representative Mark Beaubien: (217) 782-1517, (847) 487-5252, strepbeaubien@sbcglobal.net

Representative Dan Brady: (217) 782-1118, (309) 662-1100, dan@rep-danbrady.com

Representative Jim Durkin: (217) 782-0494, (708) 352-7700, jimd@ilga.gov

Representative Renee Kosel: (217) 782-0424, (708) 479-4200, rkosel@ilga.gov

Representative Ron Stephens: (217) 782-6401, ron@repstephens.com

Representative JoAnn Osmond: (217) 782-8151, (847) 838-6200 http://joannosmond.com/

Representative Jim Watson: (217) 782-1840, (217) 243-6221, jimwatson@localnetco.com

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DRASTIC CUTS ARE IMMINENT

Governor Quinn is threatening cuts to work supports and other services for our state’s most vulnerable families. While cuts to other departments are also on the table, right now the Department of Human Services is planning to:

1. Reduce employment and training services for TANF recipients by cutting contracts by 10%

2. Eliminate assistance for the poorest children who live with non-relative legal guardians

3. Eliminate the TANF work and training exemption for single moms caring for children under age one

4. Eliminate Transitional assistance for non-employable single adults.

5. Repeal reforms that improved access to assistance for struggling families, including the repeal of HB 1800 and the “no wrong door” policy.

Because the current budget includes artificially low appropriations (allotment) levels, the rate of current spending means that the state will run out and Governor does not have the authority to spend more. While there are efforts to pass a supplemental appropriations bill that would authorize more spending, we cannot depend on its passage.

Right now, we must work with other advocates to stop the Governor’s attempts to make these cuts. What you can do now:

1) Contact the Governor’s office (217/782-0244 or 312/814-2121) and call your legislators. Demand they take these cuts off the table—instead they must find solutions that cause no further harm to hard-working families, children, seniors, people with disabilities, or to the economic recovery of our state.

2) Attend the Senate Committee on Humans Services Hearing on Tuesday, February 15th, and voice your opposition and explain the devastating impact more cuts to human services would have on the families and communities you serve. The hearing is currently scheduled for 10:45 in Room 400 of the Capitol Building in Springfield.

We are working with fellow advocates to try to stop these cuts stemming from the Governor’s office and crafting additional strategies to respond to these harmful budget proposals. We will keep you informed about further actions you can take.

Paying the State’s Debt

The state still owes $6 billion dollars to providers around the state who have already delivered essential services and remain burdened with these unpaid bills. Passage of Senate Bill 3 would restructure the state’s debt so it can finally make good on its obligation to its vendors. If you wish to learn more about SB 3, click here for a fact sheet prepared by Voices for Illinois Children. We will keep you posted about the progress of the bill.

FY 2012 State Budget

In the midst of dealing with proposed cuts to and unpaid bills from the current budget, the Governor will propose next year’s budget on February 16th. It will continue to be vitally important that lawmakers understand the need to continued investment in the social structures that keeps our economy going, including the very services at risk for cuts now. We will be monitoring the budget proposal and appropriations process as decisions are being made, and will keep you posted on opportunities for you to weigh in. The Governor’s proposed FY2012 budget will be posted on the Office of Management and Budget’s website, along with information on current and previous budgets.

Questions? Contact Jennifer Becker Mouhcine at Illinois Works for the Future at 312-252-0460 ext 301.

Reforming Medicaid (Testimony to House Special Committee on Medicaid Reform)

2011-01-05T05:53:00.000-06:00

(This is the testimony I almost gave before the House Special Committee on Medicaid Reform on Monday, January 3. However, it turned out this last hearing of the committee focused on allowing the Auditor General to present testimony on the All Kids Program, which receives its funding from Medicaid. Anne Scheetz from the Illinois Single-Payer Coalition and I were the only other two people at the hearing to testify. Unfortunately, according to co-chair Barbara Flynn-Currie, the committee was running out of time for oral testimony and only wanted our written versions. It was disappointing but not completely unexpected, especially since the Auditor General also testified at the first hearing of the Senate Special Committee on Medicaid Reform. Therefore, each committee received the same information.

I based much of my testimony on draft legislation attached to e-mail from Tony Paulauski with The Arc of Illinois. Though the final version of the legislation likely will look somewhat different from what I read, I believe it is a good blueprint for what will receive a vote in each of the special committees. It appears, though nothing is certain, the Senate will begin the process of moving a Medicaid reform bill out of that community first and then onto the Senate floor. Of course, this is only speculation now, and we will all know much more in the next two days. In the interim, I thought I would post my testimony so someone could read it. Even though I am quite sure all the members of the committee already have digested it thoroughly, I thought it would not hurt to give them another medium by which they could access the testimony. No one needs to fear, however, as there will be no pop quiz following.)

House Special Committee on Medicaid Reform Testimony

As a disability rights advocate, I have been following closely both the House and Senate Special Committees on Medicaid Reform. It is a daunting task and one that cannot be taken lightly. Further, I have had the opportunity to read the draft language for the Combined HFS Medicaid Reform Bill. Though it is not light reading, it is important for everyone involved in Medicaid reform to understand how both committees intend to move forward on legislation regarding this issue. Without equivocation, I can tell you that these recommendations will face resistance from state agencies and bureaucracies, providers, insurance companies, and, indeed, advocates from all across the spectrum of Medicaid reform. That resistance is not to say that all these recommendations are wrong or ill planned. However, it is to say that by encompassing so many ideas into one piece of legislation, members of these committees and the General Assembly will face the need to revisit some of these recommendations and react accordingly. As the federal government implements sweeping health-care reform, the Medicaid system in Illinois becomes a much more fluid entity that requires proper management on all levels for success as measured by satisfaction and good health outcomes for its recipients.

The proposed legislation seemed to cover four main themes. They included long-term care rebalancing, fraud prevention and eligibility verification, improving information technology throughout Illinois' different state agencies, and managed care. I do not pretend to be an expert in any of these areas, let alone all of them. However, I fully believe it is important to discuss, at least in a cursory manner, the intent behind the committees' recommended changes to the Medicaid system. It is in the public's best interest to provide the most transparency available in legislation of this scope and importance. We would fall short as advocates if this were not one of our primary objectives in lending our voice to Medicaid reform.

No one wants to see fraud in any state agency or system. The unfortunate fact is that fraud always exists on every level of government and private business. That does not mean it cannot be limited and the individuals responsible for it made to account for their actions. Yet, in our rush to reform a system that primarily affects the poorest and most potentially vulnerable in our society, we must not overlook how these efforts will change people's lives drastically. Expanding fraud prevention and improving or tightening eligibility verification not only will save the state a somewhat significant pot of money and satisfy many who believe these are the most important reforms, it will also create a possible atmosphere of fear among many Medicaid recipients who have never allowed fraud to cross their minds. It is imperative for this committee and the General Assembly in totality to ensure that the agencies responsible for implementing these new proposals tread lightly among individuals who may not understand why these changes include them, when they are not part of the problem. The responsibility lies with the Departments of Health Care and Family Services and Human Services to explain why there are different eligibility standards and if those standards affect individuals and families in the present and in the future. This is the only fair thing to do, and in doing so, it would ease tension and make it much easier to transition into these reforms.

Improving information technology is needed on many levels in state government and not just in reforming Medicaid. It is long overdue, and many of the recommendations made by these committees cannot take place until the system currently running these programs improves exponentially. The state of Illinois can no longer afford to live in the technological dark ages and expect forward thinking ideas to fall into place. If agencies cannot "speak" with one another via appropriate and fast acting computer networks, all these meeting and discussions have been an exercise in futility. Yet, every committee member needs to understand that this kind of move into 21st-century technology comes with a cost. If you update technology to improve agency efficiency and, ultimately, reform Medicaid, you must not do it "on the cheap." These services are too vital to too many people, and they affect the lives of people in every political district in the state. Proposing these ideas and not fully funding them is worse than no reform at all. It is in Illinois' best interest to provide the initial outlay of funds that will ensure a seamless transition from an antiquated system to one that is already in use in many states across the nation. Moreover, a transition of this type is very much in the best interest of those receiving services

Long-term care rebalancing—removing barriers to community living for people with disabilities of all ages—is a unique phrase and one that has the potential to serve Illinois well. Yet, before we take great strides into the future, we need to remember the past in its stark reality. When considering spending for small community living opportunities for people with disabilities, Illinois still ranks 51st in the nation and 47th nationwide in funding community services. However, Illinois remains fifth in the country on spending for state operated developmental centers (SODCs). This dichotomy cannot last, particularly if the state truly wants to eliminate its deficit and follow the national mass trend toward community-based services.

Though it is gratifying to read proposed legislation that promotes a pathway for Illinois to move away from its institutional bias, these are currently simple proposals that require political will to implement. I hope when faced with resistance from unions, unfortunately misinformed family members, and other special-interest groups, these recommendations live to see the light of day. It is no longer a matter of what advocates consider fair and just. Living independently within the community is a right guaranteed by the US Supreme Court in the Olmstead decision and a reality facing Illinois based on recent court decisions that force the state to move away from institutionalization.

Yet, again, as with updating technological standards, Illinois must face the reality that funding community services is necessary to create an environment conducive to long-term care rebalancing. The current infrastructure for community services is lacking at best. Illinois ranks near the bottom of the country in terms of affordable and accessible housing. There is an overwhelming need to build more residences that can act as group homes, CILAs, and, most preferentially, independent residences for people who leave institutions and nursing homes. If the initial investment is made by the state, it will create new jobs immediately and in the future, as workers from institutions and nursing homes transition into the workforce of community services. The jobs created by reinforcing community-based infrastructure would bolster a sagging economy and increase the tax base in the state. Contrary to union complaints, their members can continue doing the same kind of work in a much more residential setting, as opposed to an institution, without the risk of falling into poverty. However, the most important signal shown by this type of action is Illinois' actual commitment to deinstitutionalization.

Finally, it seems that true Medicaid reform, as put forth by both communities, hinges in large part on managed care. Though this style of health care delivery system and its impact on people with disabilities has been discussed in Illinois for more than a year, the plan for its implementation seems already in place. It is a bold premise to have fifty percent of Illinois Medicaid recipients on some form of managed care by January 1, 2015, as discussed in the Combined HFS Medicaid Reform Bill. That time line coincides quite conveniently with the end date of a managed care pilot program, which begins this month in several northern Illinois counties. It seems difficult to understand how the state and HFS can adequately have time to review how a pilot program like this succeeded or failed when there is already a law stating that more than 1 million Medicaid recipients are to receive managed care, regardless of the pilot program's outcomes.

Legislation of this magnitude requires careful consideration at each step. If people with disabilities are going to take part in a pilot program, which purports to measure the effectiveness of managed care for acute health and possibly long-term care, it only makes sense that the program needs to receive adequate evaluation before it goes statewide. Managed care has yet to show its effectiveness in providing long-term care needs for people with disabilities. Why should members of the disability community in Illinois bear the brunt of experimentation before adequate analysis determines whether this system actually provides the care intended and absolutely needed for individuals with disabilities? Even if managed care is successful in the pilot program, showing the state both tremendous health outcomes and significant monetary savings, there remains a need to guarantee this type of program will work throughout Illinois before legislation mandates that it moves in that direction.

There is a need for oversight with managed care and, indeed, with Medicaid reform in general. People most affected by the changes, particularly those in the disability community, need to have a voice and a strong presence at the table, as their futures are discussed in the same context as creating a better fiscal environment for state government. The General Assembly should appoint an independent review board to discover if these reforms, especially those pertaining to long-term care rebalancing and managed care, are making a lasting and satisfactory difference in the lives of those affected most by these changes. If everyone agrees there is success across the board for these reforms, then moving forward with them into the future is a reasonable and beneficial course for both Medicaid recipients and the state of Illinois. However, if success is still elusive, there should be no doubt or hesitation to revisit these reforms and make the necessary changes that will benefit everyone.

Nothing is set in stone, even as the federal government creates an implementation plan for the Affordable Care Act. All the disability community wants are progressive ideas put forth with deliberate and transparent motives. We want an opportunity to take part in every aspect of this discussion, and we want a guarantee that the state will listen to our voices and not just hear them. As advocates, we will not stop pressing this issue until we feel those in positions of power understand that we organize, speak forcefully, and vote. As a political movement, we exist not in the shadows but in the spotlight. It is time for everyone who would make decisions for us to recognize that truth and the power it wields.

Tyler D. McHaley, M.S., M.A.
President Springfield Area Disability Activists
334 Norwalk Rd.
Springfield, IL 62704
Cell: (217) 899-5015
E-mail: Tyler.Mchaley@gmail.com
www.disabilityactivists.org

Rush to Reform

2010-12-01T05:11:00.000-06:00

(This is my written testimony that I submitted to the Senate Special Committee on Medicaid Reform. I went to the hearing on Monday and hoped I might have a chance to give oral testimony, though I knew the committee had said there were time constraints. Still, I thought that it would be good to hear what the state agencies, particularly the Department of Healthcare and Family Services, and the insurance companies would say about how they envisioned a reformed Medicaid system in Illinois. I also wondered how the committee would engage each witness and state their overall impressions and purpose.

It was refreshing to hear Senator Steans, the committee co-chair along with Senator Righter, say early in the proceedings, albeit jokingly, that the committee was organized as a gesture to Republican to help gain votes for revenue increases in the spring. None of us should be oblivious to the fact that this community, as well as its sister entity in the House are not going to reform Illinois' Medicaid system in one month. Republicans do want a chance to eliminate some of the state's spending in the Medicaid program, and that is not an unreasonable request. The same is true for the other committees in both the House and Senate, which focus on cutting some of the waste out of the Worker's Compensation program. Nonetheless, Illinois politics are a game of give-and-take, and this is but one example of such a compromise.

I will not reiterate many of the points that Bill Gorman, Executive Director of the SILC, or Tony Paulauski, Executive Director of The Arc of Illinois, already stated in earlier emails yesterday. I will just point out my reflections on some of the testimony. I truly believe it is a shame Tony did not have a chance to testify, as his would have been the only testimony from the perspective of advocates. Instead, there was much talk from state agencies about how different types of reforms, such as changing passive redetermination (which is the process by which people receiving Medicaid benefits only need to fill out the proper forms to remain eligible each year) and eliminating wasteful emergency room visits, could save the state Medicaid dollars. Even though some of this is true, there was much more talk about client responsibility.

There is always a need for responsibility among all parties involved in any large government program like Medicaid. However, it seemed some of the senators, especially Senator Righter, wanted somewhat severe consequences for individuals who overused, in his opinion, emergency rooms, for example. I have no doubt there is immense fraud in the Medicaid system, and people misuse it every day. Yet, the vast majority of people who use Medicaid does so correctly and without any intent to defraud the state government. There is not a simple solution that can be painted with broad brush strokes to end fraud and abuse in the program. As one witness from an insurance company stated, "There is no silver bullet." There needs to be serious and diligent consideration of how to suggest and enact reforms, which do not risk the health of everyone receiving Medicaid and committing no fraud. I am not the one to say what that reform should look like, but it is important to get the opinions of advocates throughout the state. Unfortunately, in this first of three hearings by this committee, those voices were left muted.

Perhaps, in another blog post, I will present more ideas or give more reaction to how the committee dealt with the issues presented to it. I will say that for a system that many consider so broken, I have never heard witnesses speak about how well their individual parts of the program are working as I did on Monday. Everyone agreed that reform was necessary, but nearly all the witnesses, from state agencies to insurance companies, declared that their programs were working very well. Further, there plans could make the system that much better. If things are going to be this easy, I see no reason to have any more hearings. It seems that many of the players, especially those that can profit from the Illinois Medicaid system, already have all the answers necessary, and the state just needs to implement them. I hope sarcasm comes through in the written word as much as the intent does during the writing process. To quote some blog somewhere, "I'm not saying, I'm just saying.")

Senate Special Committee on Medicaid Reform Testimony

As a disability rights advocate, I find it laudable and gratifying that the Senate Special Committee on Medicaid Reform is looking for ways to improve Illinois' current system. The need for reform has existed for years, and, unfortunately, too many General Assembly sessions have passed with no attempts at resolution. Like Social Security on the national level, Medicaid reform in Illinois seems a very difficult and daunting task to tackle.

However, as the committee has been given only a month to produce a strategy to change a sweeping and vitally important program in this state, it is essential that every member considers each idea carefully and makes no hasty judgments about what types of reforms the program needs. If the prevailing common wisdom becomes that only cuts to the very core of the Illinois Medicaid system are the answers, we, as advocates, agency directors, and health care experts, will not have provided the answers necessary to "fix" Medicaid. Cutting a program on which so many people depend every day is as nonsensical as wastefully spending on excessive bureaucracy and redundancy in various phases of the program. This is a time for the committee to find the creativity to cut out waste and fraud, while leaving a seamless and more focused program intact.

The national healthcare system is growing exponentially and at an unsustainable rate. There is no debate about that, and the new Affordable Care Act likely will bring change and reform, even if somewhat slowly. However, it is important to remember Illinois' place in the national healthcare picture. According to the Sargent Shriver National Center on Poverty Law's online publication "The Shriver Brief," Illinois' Medicaid billings grew slower than the national average, from 2008 to 2009, at 4.2 percent and only 4.4 percent during the last four years. In FY 2010, the projected national average of medical costs was 7.7 percent, while Illinois was only expected to grow by 7.0 percent. Among all states, Illinois ranks 42nd in per Medicaid beneficiary expenditures. The national average is $4,575 per Medicaid beneficiary, and Illinois spends $4,129 per beneficiary. Overall, Illinois effectively minimizes Medicaid cost to the taxpayers and maximizes, for the most part, the federal dollars available. The Illinois Medicaid program spends just $.39 of every one dollar in general taxes. Therefore, it is reasonable to see in some aspect that the state's Medicaid program is performing much better than many reports, analyses, or opinions conclude.

However, there are many ways to streamline Medicaid in Illinois and provide better services for those receiving benefits from the program. First, we must come to the realization that Illinois institutionalizes more people with disabilities than nearly every other state in the nation. Illinois still warehouses thousands of individuals with disabilities in state operated developmental centers (SODCs), nursing homes, and large ICF/DDs. In terms of spending for small community living opportunities for people with disabilities, Illinois is ranked 51st in the nation. Further, Illinois is 47th nationally in funding community services. Yet, this state is fifth in the country on spending for SODCs. The state government spends nearly $170,000 per person every year on hiding away thousands of people with disabilities in state run institutions. Yet, the irony and tragedy of the current system is that providing the home and community-based services for the same people is much closer to $50,000 annually. Even as Howe Developmental Center closed on June 30, 2010, the $30 million in savings, which should have funded more community-based supports and settings, instead, was funneled back to the remaining SODCs.

These facts are illustrative of Illinois' institutional bias toward people with disabilities. Further and worse is the fact that this bias affects how the state government prioritizes taxpayer money. Here is a lion's share of the waste the committee wants to eliminate. Simply by providing more home and community-based services, Illinois can save hundreds of millions of dollars by moving people out of institutions, where they can and want to live as an equal member of the community. A recent study cites Illinois as being worst in the nation in providing housing to people with disabilities, and that is where a paradigm shift can occur. By investing in adequate and accessible housing, Illinois saves money in the Medicaid program and, simultaneously, stimulates the state economy by producing jobs in areas like construction, where so many people have seen employment possibilities disappear.

This committee and Illinois' elected officials have a responsibility to comply with the 1999 Olmstead Supreme Court decision and make it possible for people with disabilities to live in the least restrictive environment possible. These are not arbitrary political choices or philosophical debates we can have concerning moving more individuals with disabilities into the community. It is now US law and the right of every member of the disability community to live where he or she chooses. If Illinois does not change the institutional mindset it has possessed for decades, there is no chance for Medicaid reform in this state. We simply will find ourselves walking in the same circles that have always led us to the same dead ends, which are more spiraling Medicaid costs and the complete lack of sensitivity to not only the choice of the disability community but also the thin legal standing on which Illinois finds itself.

To capture more federal funds and ensure Illinois is spending its Medicaid dollars wisely, the committee and General Assembly must consider two very important and similar issues. First, the state government needs to pursue every dollar that comes from the federal "Money Follows the Person" (MFP) legislation. Centers for independent living across the state are trying to help individuals with disabilities move from institutions and nursing homes into their own homes within the community. Yet, Illinois is lax on providing those funds the MFP program offered to states to transition people from an institutional setting to the community. How can the state government and its overseers in the General Assembly allow such mismanagement to continue? If everyone in the state really wants Medicaid reform, this is an ideal place to start.

Second, the Independent Living Movement stresses consumer choice as its main tenet. People with disabilities deserve the freedom to choose where and how they live in every sense of that word. If government officials truly agree with that sentiment, it is time to examine the possibilities of a self-directed care waiver system through Medicaid. This is a cost-effective program, which keeps people with disabilities living in the community and provides them with the resources necessary to live an independent and productive life. Moreover, this is not a groundbreaking idea. Many other states have implemented such a waiver program with great success, and many advocacy groups in Illinois are putting forth the call for this state to move forward with such a program. In fact, a self-directed care waiver is imperative if Illinois, indeed, intends to move away from its history of institutionalization and into a future of inclusion and equality.

Illinois will see less inefficiency in the Medicaid program by reforming some of its current and proposed programs. The Department of Healthcare and Family Services (HFS) is moving forward with a Medicaid managed care pilot program in suburban Cook and five other collar counties. Disability rights advocates need to remain involved in the contract negotiation process with the two managed care organizations (MCOs) that won the bids from HFS. However, after the contract is signed, advocates must still actively participate in the entire managed care process as part of an independent oversight committee, which can act as a guardian of the rights of the people involved in the pilot program. It needs to be independent and comprised of providers and healthcare experts as well as advocates. This type of committee can protect against abuses, lack of direction, or simply wrong decisions they could have terribly adverse effects on consumers within this pilot program area. In addition, as managed care likely goes statewide, this oversight committee can provide equal protection against and guidance to the MCOs providing healthcare to people with disabilities throughout the state.

Yet, another area where Medicaid efficiency could increase is in the third phase of this managed care program, which focuses primarily on long-term care needs of seniors and people with disabilities. MCOs have no background in this area and could make what is a sustainable situation far worse. I urge this committee to communicate to HFS that the third phase of this pilot program is untenable for members of the disability community. Without proper education and a proven history of results in providing long-term care needs, the MCOs need to leave this kind of care to the individuals who know how to provide it best. Though this argument may seem as if I am proposing that Illinois gets "stuck with the tab" on the final phase of this managed care program, the truth is just the opposite. By avoiding costly mistakes that MCOs will inevitably make in efforts to provide quality long-term care, eliminating phase three saves Illinois, potentially, millions of dollars and the damage that could result in thousands of lives.

One thing this committee must avoid is the idea that these reforms need to happen overnight and that legislation needs to right every wrong in the Medicaid system. Moreover, the mere notion of Medicaid reform is not a political volleyball that one party can bounce to the other. This program is a matter of life and death to many people and provides them with the resources they need to live healthy and dynamic lives. Political agendas must be off the table when discussing any kind of Medicaid reform. To think that Medicaid recipients do not watch closely what happens to their benefits and, subsequently, their lives is foolishness. People receiving Medicaid vote and understand their vote counts. This is no area in which to try to impose political ideology. Medicaid reform requires conscientious thought, sensible ideas, and realistic goals. If those elements fail to find their way into an overall Medicare reform package, more could be lost than simply taxpayer money. It is up to all of us to ensure that is not the case.

Tyler D. McHaley, M.S., M.A.
President Springfield Area Disability Activists
334 Norwalk Rd.
Springfield, IL 62704
Cell: (217) 899-5015
E-mail: Tyler.Mchaley@gmail.com
www.disabilityactivists.org

A Testimony and a Call to Action from the Arc

2010-11-19T02:46:00.003-06:00

(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.
______________________________________________________________________________

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

2010-11-01T18:27:00.001-05:00

(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!

Last Line of Defense

2010-05-03T16:23:00.000-05:00

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.

Question and Answer. Period.

2010-03-27T00:59:00.000-05:00

Question and Answer. Period.

As you read this blog post, you may find yourself thinking you already know most of this information or wondering why this is important to you and how it affects your life. These are valid questions, which is part of the reason why it has taken me so long to post on something most of us think is very straightforward. I wanted to make sure I did not repeat myself on budget issues that I discussed in the last post or rehash legislation I already covered. I always want to write about fresh and new subjects, which, of course, is not always possible, especially when the General Assembly is in session and the state is facing such a tremendous budget crisis. I realized that I do not always get to choose my topics; sometimes, whether I like it or not, they choose me.

A large part of me wanted to write about the health care reform bill passed by the U.S. Congress this week. I wanted to discuss how it affected people with disabilities. I wanted to mention how it included the Community Choice Act as a part of the overall legislation. However, there was a nagging voice in the back of my mind, telling me that information is available to most people through television, newspapers, and the Internet. Still, I have included below my post a press release from ADAPT, which goes into a bit more detail on how the Community Choice Act affects and benefits people with disabilities.

This blog post does, I hope, what is needed right now in the Illinois disability community, and that is educating people on how the Governor's proposed budget will affect them if advocates do not cause serious change to it. There is always a risk when discussing the same topic many times, but I feel that is a risk worth taking. Instead of wringing our hands and worrying about what could happen to us if the intended cuts become reality, we need to understand what those cuts mean to us and what we can do to stop them. I do not limit, however, this post only to the budget, as I also focus on other plans the Illinois state government has for people with disabilities, such as managed care.

The impetus behind this entire post, though, was Access Living's March 19 public forum on managed care, entitled "Managed Care, Managed Lives." Jennifer Thomas, the Personal Assistant Coordinator for Access, put together the event and did a masterful job. She and Tom Wilson, Access' Personal Assistant and Health Care Reform Team Leader, facilitated the forum as well as discussions on a myriad of topics, including the Division of Rehabilitation Services' Home Services Program (HSP), education, the managed care pilot program developed by the Department of Health Care and Family Services (HFS), and the Governor's proposed state budget in its totality.

There was a good crowd of, approximately, 50 people there to take part in the forum. Many who came to the meeting knew the state had many problems with its budget and its ability to manage money, but I suspect they did not realize how deeply the roots of those problems burrowed their way into every layer of the state's fiscal foundation, especially relating to social services. The job of those of us addressing the group that day was to inform and educate grassroots advocates about the problems facing those services particularly geared toward people with disabilities. This was not an easy task, as this is a difficult topic to discuss with people charged to implement policies with which we disagree. If those familiar with the problems as well as the proposed solutions have trouble giving informed answers to relatively simple questions, how is the average citizen supposed to understand all the nuances of pension reform, surcharge taxes for education only, and cuts to social service programs, which are cleverly disguised as "savings?"

Yet, that was our job and our responsibility. As one of the speakers for the forum, I was actually quite excited about the opportunity before us. I believe these circumstances and these precarious times make advocates excited, make our adrenaline start to flow, and make us realize we are not fighting for ourselves or a small group of individuals with similar ideas. It is at these times that we speak for our entire community, that our words have resonance and meaning that reach beyond strategy sessions, and that we need to make certain the passion we claim to have for these issues manifests itself in a contagious atmosphere that everyone experiences. In short, advocates were born for opportunities like these, when we can cause other advocates to feel the same energy and the same need to fight that we feel.

Tom began the form by speaking about the budget and all of its trouble spots. He mentioned many of the cuts that would affect—drastically and negatively—people with disabilities in Illinois. He also discussed at length the managed care pilot program proposed by the HFS and its potentially harmful effects on the nearly 40,000 seniors and individuals with disabilities, who unknowingly are caught within the program's web. Tom, Jennifer, and I told everyone there about the cuts to the HSP, including the service parameters, an ingeniously devised term that actually means capping hours for various necessities and imposing a new $2000 asset limit for people to remain eligible for the program. We also talked about the fact that all new HSP enrollees must be Medicaid eligible to receive services, which shrinks the population pool by, essentially, disqualifying people with disabilities who work because of how much they earn.

This was new and unexpected information to many of the people at the forum. Obviously, most of them were surprised and angry over these changes to a program on which they rely so heavily. Of course, many of us rely on the HSP, and we feel these changes were forced upon those of us that politicians and bureaucrats feel have limited political power and, thus, less ability to fight back. In that assumption, they are wrong. Last year, we fought similar caps on the HSP hours, and we forced the Division to withdraw the plan. Though this is a new year with new fiscal calamities looming for the state, the same arguments apply. Illinois' state government cannot attempt to cover its fiscal ineptitude by breaking the backs of its disability community. We will simply not allow that to happen.

Dr. Anne Sheetz of Physicians for National Health Program (PNHP) and representing the Illinois Single-Payer Coalition (ISPC) was the next speaker, and she discussed the reality of managed care, what it is, and what it means to the disability community in Illinois. Dr. Sheetz underscored ISPC' s strong endorsement of HB 5113, which is a bill sponsored by Representative Mary Flowers of Chicago that is still awaiting a vote on the floor of the Illinois House of Representatives and has currently been re-referred to the Rules Committee. HB 5113 would stop the HFS managed care pilot program in the five collar counties surrounding Chicago as well as southern Cook County. Support for HB 5113 was a cry echoed by the other speakers during the rest of the forum.

ISPC work for single-payer extended and improved Medicare for All at both the state and national level. Further, according to an ISPC press release, research shows for-profit health care organizations increase costs as opposed to lowering them, though delivering a lower quality of care. ISPC opposes the use of state and federal funds to provide services for the elderly and people with disabilities that would instead benefit and enrich the for-profit health insurance industry under a managed care program. Moreover, ISPC believes a pilot program of this nature would increase health care bureaucracy rather than decrease it, while simultaneously restricting patients' access to the providers of their choice. Finally, and perhaps most importantly, ISPC reiterates what many disability advocates have been decrying about the proposed managed care pilot program, which is the possibility that insurance companies put in charge of approving or disapproving expenditures for durable medical equipment would place another obstacle in the path of people with disabilities living freely within the community and not in institutions. To read the complete statement published by ISPC, follow the link to the organization's most recent action alert.

At that point in the forum, I spoke about my experiences with managed care from the perspective of a disability rights advocate. I told the people about my need for a new power wheelchair in 2002, when I had Health Alliance as my primary insurance. I discussed how the insurance company's representative was quite cordial and assured me the company would cover my new chair to a limit of just more than $6000. The only problem with this solution, which Health Alliance felt was very reasonable, was that the actual cost of my new chair exceeded $20,000. Health Alliance did pay more than $6000 toward the cost of the chair, but the rest was passed along to Medicaid and, thus, Illinois taxpayers. The irony, in my opinion, of this entire situation was that, when this occurred, I was a state employee. Typically, the State of Illinois receives praise for its generous benefits packages for employees, but in this case, as I fear may be the case with the proposed managed care pilot program, this type of insurance package did not work for an individual with a disability and has likelihood for a repeat performance in front of 40,000 unwilling spectators.

Rod Estvan, Access Living's Education Outreach Coordinator, next spoke about cuts to education found within the Governor's proposed budget. He specifically spoke about cuts in special education programs, which totaled $400 million, an astronomical and devastating amount that would drastically reduce services to students in special education classes. Though the Governor also proposed a one percent income tax surcharge that would offset the more than $1 billion in cuts to education and almost double the state's spending in the area, the revenue from that tax increase would only apply to education. All the social services cuts mentioned thus far would require some very clever accounting to receive simply enough funding to maintain fiscal year 2010 levels.

Access Living's Independent Living Skills Coordinator, Carleda Johnson, discussed the paratransit problem facing the city of Chicago and citizens with disabilities. It seems that no matter how populated or how seemingly advanced one city may be over another, they each have similar problems. The individuals at the forum discussed how drivers would not wait more than five minutes, if that long, for people to reach the pick-up area. Then, there were complaints of rudeness and professional behavior. All these problems and more are equally on display in cities like Springfield, Champaign-Urbana, Peoria, and many others. A group focusing only on paratransit issues meets regularly at Access Living to discuss problems and find potential solutions. This is a strategy that may work in other parts of the state is well.

One of the most important and surprising aspects of the forum was one of the attendees. It was Mitch Lifson, who is the Deputy Director of Policy and Budget for Illinois Senate President John Cullerton. Jennifer Thomas deserves all the credit for inviting and being persistent enough that someone like Mr. Lifson would come to the forum. I have no doubt that, at certain times during the forum, Mr. Lifson might have thought he found himself in the proverbial lion's den, especially as we discussed the various budget cuts and the managed care pilot program. Yet, in my opinion, he was nothing but a gentleman. He listened to our complaints and offered answers when he could, which is to say not very often. However, that is not meant as a derogatory statement toward Mr. Lifson. In fact, his advice on how we could proceed to fight the budget cuts and a straight managed care program in Illinois was very insightful. His inability to offer very many answers reflects more on our current state of government in Illinois than on any job Mr. Lifson does.

However, one important piece of information Mr. Lifson passed along to me concerned a potential next step if HB 5113 did not defeat the HFS proposed managed care pilot program. He said every major program like this must follow regulations set forth by the General Assembly, and the Joint Committee on Administrative Rules (JCAR) puts those regulations in place. If the pilot program falls into this category, we could shift our advocacy efforts toward JCAR and its members from both the House and Senate. Though this all may sound very technical and boring, as I said in the beginning of this blog post, every detail is important, and we, as advocates, must stay vigilant for every opportunity that arises.

Overall, the forum was a success. As Tom Wilson said, it gave us a chance to educate people on several important issues confronting the state and, thereby, confronting them as well. We often need to remember that our jobs are not simply to agitate but also to educate. Without raising awareness about a whole host of issues facing the Illinois disability community, our advocacy efforts are wasted. Before we can storm the Bastille, we first need to know where the Bastille is and what to do when we get there. If we are grassroots advocates, education acts as our seeds. As we continue to educate and advocate, the many questions will become much fewer, and the answer always remained the same: freedom.

There is always much more to do and much more to write. It is my sincere hope that I will have another blog post ready in a shorter length of time than it took to put up this one. A group of advocates and interested parties plan to meet March 31 to discuss with HFS the managed care pilot program. I will definitely post something about that meeting, particularly if our efforts bear fruit and even if not. In the meantime, the General Assembly is in recess for two weeks. Advocates should use this time to make certain everyone is on the same page, our voices are loud and carry the same message, and we have a plan for moving forward on all the fronts before us. I will do my best to keep everyone as informed as I am.

I do have one favor to ask of you. When I started this blog, I did so more for something to do than to use it as a serious platform for discussing disability rights issues. However, as times change, so do our intentions. That is where I find myself now. I want this blog to be informative, useful, and, perhaps occasionally, inspiring, though I despise that word. In that vein, I find the blog's name, "I'm Not Saying, I'm Just Saying," a bit too frivolous to reflect its intent. Thus, I am asking you for opinions and contributions for a new name for the blog. Even though the website address will not likely change, at least, the overall format and presentation will. I would make this a contest if I had a prize to give aside from my gratitude. I am afraid that token and whatever bragging rights one may feel about something like this will have to serve as the best prize available. Regardless, feel free to let me know what you think this blog best represents, and I will unveil a new name in the next one or two weeks.

The ADAPT press release regarding the Community Choice Act within the new federal health care reform legislation is included below this post. You can find more information on ADAPT at their new blog "Defending Our Freedom." As always, I appreciate your interest. Keep fighting.

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News Release

For more information, contact:

Mike Oxford, (785) 224-3865

Bob Kafka, (512) 431-4085

http://www.adapt.org

ADAPT Celebrates Community First Choice Option in Health Care Reform

ADAPT, the national cross-disability grassroots group, today celebrates the inclusion of the Community First Choice (CFC) Option and other long term care-related provisions in the health care reform package passed by the House on Sunday, March 21. These provisions bring people with disabilities across America one step closer to home and community-base supports and ending the institutional bias in Medicaid. Twenty years ago, with the passage of the Americans with Disabilities Act, people with disabilities realized the beginning of a civil rights dream of access to all levels of society. Today, ADAPT continues to fight to protect that dream, re-committing to the enforcement of the ADA-based Olmstead Supreme Court case, which holds that no person can be forced to remain institutionalized against their will.

The Patient Protection and Affordable Care Act and its companion legislation, the Reconciliation Act of 2010, together include several items related to home and community based services. For example, starting in October of 2011, the CFC Option will give states the choice of providing home and community based services to Medicaid recipients instead of simply forcing them into nursing homes. The federal Money Follows the Person program will be extended until 2016. Provisions of the CLASS Act are also included in the new legislation. States will have increased federal funding matching incentives to fund community services. Yet while passage of this legislation is a social landmark, much remains to be done.

ADAPT recognizes that ensuring community choice for all will require a variety of efforts, from both the grassroots and the government. ADAPT's Defending Our Freedom (DOF) Campaign seeks accountability for enforcing Olmstead from the U.S. Department of Health and Human Services' Office of Civil Rights. DOF demands that the Obama administration aggressively support legislation and pursue litigation that ensures Olmstead enforcement across the country. Finally, DOF calls on grassroots people with disabilities to document their struggles to secure home and community based services.

ADAPT re-commits to fighting together with allies such as Senator Tom Harkin of Iowa and other members of Congress towards the vision of meaningful community integration for people with disabilities and seniors across America. For more information, see http://www.adapt.org/ and http://defendingourfreedom2010.blogspot.com/.

# # #

FOR MORE INFORMATION on ADAPT visit our website at http://www.adapt.org/

The Fierce Urgency of Now

2010-03-18T04:01:00.002-05:00

The Fierce Urgency of Now

This blog post has taken longer to write than some others have. As many of you know and some who do not live in Illinois may not, the last three weeks have been very busy at our state Capitol. Last Wednesday, March 10, Governor Pat Quinn unveiled his budget to the General Assembly. There have been some massive cuts to many state agencies but, most notably, to social service agencies, particularly the Department of Human Services. Thus, I will spend this blog post updating you on some legislative news that does not pertain directly to the budget and, yet, has significant importance to the disability community in Illinois. However, I also will give you my interpretation of how the budget affects the issues and concerns we find most important. I am no expert on budgeting or analyzing state budgets, but I tried to take some time to analyze the different cuts and increases to the various state agencies and try to disseminate that information in what I hope will be an understandable manner.

This post is divided into two sections. The first deals with issues we faced in the last week or two and how we were able to address them. I realize the budget may seem like the overarching theme all of us should cover right now, and, to an extent, that is very true. I will cover the budget as much as possible in the second section. However, I believe it is also very important for us to know other legislative battles and victories, for lack of a better term, we faced or still face to this day.

What Can Be Done

March 10 was an exciting and exhausting day. It began with an Illinois House Human Services Committee hearing. Several advocates, including Ann Ford, Barbara Prichard, Nick Quealy-Gainer, Jennifer Harrison, and myself, attended, as we had various issues with some of the legislation being proposed. Of particular concern to me was Representative Riley's HR 899. Though a resolution, which lacks the same enforcement power as a standard bill, the legislation still called for DHS to report to the General Assembly every year beginning December 31, 2011, about how people leaving state institutions and moving into the community were disrupted by lack of health care access. Barbara Prichard and Nick Quealy-Gainer, both from the Campaign for Real Choice in Illinois, and I discussed this issue in depth, trying to decide how best to address our concerns with the Representative. These were not easy discussions, as politics can be equally as delicate as it often is bare-knuckled. We knew we had to walk a very narrow line, while still holding true to our principles and beliefs.

I met with Representative Riley in his office on March 9 in hopes of convincing him to change the language in his resolution. The problem many disability advocates in Illinois had with this resolution was the very narrow focus on the disruption to health care access. We felt it presented a potentially negative connotation, even if not intended, because of uses of words like disruption. Moreover, a great number of advocates believed the language should be more expansive and include community supports and services as well as every other issue vital to individuals transitioning from institutions to community-based settings. Accessible and affordable housing, transportation, adequate personal assistant services, individual support options, and a variety of other provisions representing the panoply of concerns from disability advocates' perspectives received no mention in the resolution.

I expressed our concerns to the Representative, and he was receptive to them. Though he readily admits he is not in favor of closing the Howe Developmental Center, he did say he was open to language that is more inclusive. Unfortunately, he felt the deadline for moving legislation out of committee was too close to change the language at this point. He did agree with my suggestion that the Illinois disability community could work with him in the next General Assembly session to introduce a new resolution reflecting the language we felt was more appropriate to our cause of moving people out of institutions and into the "least restrictive environment" in the community. I left the meeting without complete satisfaction but with a sense of cooperation on the part of Representative Riley, though I still did not know what to expect in the hearing the next day.

When HR 899 came before the committee for testimony, DHS stated that, because of budgetary constraints, the agency could not afford to move ahead with these types of reports on a yearly basis. I must admit that I was not shocked to hear a state agency express concerns over money as a reason it could not provide a service to the Illinois citizens or legislators. My cynicism notwithstanding, Barbara and I then testified regarding our concerns about the resolution's language. We both expressed the idea that follow-up on individuals transitioning out of institutions is a good idea and important for the state to ensure proper supports and services were in place to avoid the same individuals needing to return to similar types of institutions. Yet, we also related our concerns about the narrowly focused language in the resolution. In what I consider to be a very heartening turn of events, Representative Patricia Bellock moved to hold the resolution in committee until the language had received the changes we suggested. Though the end result was likely not what Representative Riley wanted, he was cordial and agreed to meet with us late this year or early next year to incorporate different language into the resolution.

I realize this is a lengthy explanation of one resolution in one committee hearing. However, it is important to understand that most, if not every disability advocate with whom I discussed this issue, felt as if there was no way to change the Representative's mind or prevent the resolution from moving out of the committee. Barb did not do that. I did not do that. Further, I am fairly certain the testimony from DHS did not do that. However, as Representative Bellock told Barb and Nick after the hearing, it was the testimony she heard that made her realize the resolution needed to stay in the committee until the language received the proper changes. The bottom line to this effort is that regardless of the situation and no matter the conventional wisdom, if we do not try to make a change, there is no hope for change. If we work, even in the face of tremendous adversity, there is no true way to predict what the outcome will be; and every so often, we just may find we win the day.

Later the same day, the House Disability Services Committee heard testimony for HB 5152, also known as "Brian's law." In reality, this bill never should have merited consideration. In a just world, this bill would have never been written. Yet, in a just world, there would be no State-operated developmental centers or similar institutions, like the ones that have received far too much negative publicity in the last few years. In a just world, Illinois would do the right thing. However, I am not so naïve to believe we live in a just world. We live in a pragmatic, often sterile, and cold world, which can sometimes push us to our limits, if we allow it the opportunity.

Brian Kent lived in the Ann Kiley Developmental Center in Waukegan Illinois. He lived there, approximately, 99 days, and in that time, he suffered 57 injuries, 18 of which could not be explained, all under one-to-one supervision. He died October 30, 2002. His injuries resulted from abuse and neglect. His death came from a ruptured peritoneum, which stemmed from a blunt force trauma to his small intestine. Of course, the fatal blow fails to bring attention to his other injuries, such as the extreme bruising and swelling around his face and other parts of his body, including his private parts.

Does this description seem too graphic for you? If so, I do not apologize, for what I relay to you now comes from the testimony of Brian's parents, who spoke passionately and eloquently about their son and for their son, before the Disability Services Committee. If it is difficult to read, know that it is also difficult to write, and realize how difficult it must have been to give this testimony about someone you dearly love before a room filled with too many strangers. That is what the Kents did, and they did it well.

The minority party agreed to pass Brian's law unanimously out of committee, with leave for a vote, since no legislator opposed the bill. The measure, as it was amended, establishes an independent team of experts, which includes medical personnel, to examine at regular intervals all deaths occurring in both State-operated and community-based developmental disability and mental health facilities. The team's goals will consist of identifying problems, making recommendations to prevent unnecessary injuries and deaths, and ensuring affirmative action is taken to address the problems. This is the description of the legislation presented by Equip for Equality, which is the disability rights organization that spearheaded Brian's law and guided the Kents through the legislative milieu of Illinois politics. Not only the Kents but also Equip for Equality deserve much credit for making sure this issue was not silenced forever, even though Brian's voice, tragically, was.

I., for one, do not ever want to see another "Brian's law," "Sally's law," or "Johnny's law." Should not one be enough? Why would we ever need another Brian to make us aware of the abuse and neglect it takes place in institutions across Illinois? We already know this, just as we also know there are more Brians, Sallys, or Johnnys who need help, protection, and the ability to live their own lives where they choose. "Brian's law" does much to help the situation, but only a complete change in our state's attitude toward people with disabilities will completely and happily force me to stop writing about issues like these.

What Must Be Done

I just described two legislative victories for the Illinois disability community. While there is good reason to be happy about these kinds of legislative "wins," it was obvious from the release of the Governor's budget and the subsequent briefing by DHS Secretary Michelle Saddler that there is still much work to do, if we truly intend to keep the disability movement progressing forward. My basic overview in this section will be old news to many of you, but I still believe it is important to understand how the budget directly affects all of us as Illinoisans and what we can do to effect change to the budget.

For fiscal year 2011 (FY11), Governor Quinn's proposed budget represents a $150 million decrease in general revenue funds (GRF) from FY10 appropriations. There is an overall increase of $250.4 million for the FY11 GRF proposed budget. However, those numbers can be misleading, as many of the increases in one area of an agency come from decreases in others. I think Secretary Saddler expressed it best, when she stated that this budget request was not what DHS wanted and does not reflect how the different agencies want to conduct business in the coming year. Nonetheless, with no new revenue, there must be cuts, and social services always receive the bulk of them. It is typically a politician's easy answer to the question of where to save money, especially since many of the people affected by social services do not have the voices and lobbyists to speak for themselves as other groups and industries do. It is also often popular to discuss cuts in services as overall savings for the state budget. Yet, it is equally important to remember that, no matter how the language is spun, a cut in services means that any savings mentioned comes from a lack in services previously available to those who actually need it.

Knowing that, most agencies within DHS received more decreases than increases in funding even with all the shifting of money occurring. DHS represents six different agencies, including the Divisions of Developmental Disabilities, Human Capital Development, Mental Health, Rehabilitation Services, Community Health and Prevention, and Alcohol and Substance Abuse. However, I will only focus on a few of the divisions, but to learn more about the entire DHS budget, visit DHS: FY 2011 Budget Briefing. The Divisions of Developmental Disabilities and Mental Health received the most glaring and drastic cuts of $103.3 million and $90.7 million, respectively. These cuts came primarily from the elimination of all non-Medicaid grant and community-based programs. For the Division of Developmental Disabilities, these cuts came concomitant with a 2.5% across-the-board rate reduction.

The Division of Developmental Disabilities received a $29.4 million increase to restore FY10 one-time shift to non-GRF funds. However, that money also represents funds to transition individuals from State-operated developmental centers (SODCs) into CILAs and community-based settings. The division's budget specifically allows for the transition of 125 individuals out of SODCs and into the community. The budget also provides funds for 93 more individuals who are considered wards of the Department of Children and Family Services to receive transitioning services. Further savings come in the form of $15 million with the closure of the Howe Developmental Center with these monies then transferred to other state operations. Still, even as the closure of Howe represents a victory for the disability community, using the funds saved for anything besides community supports is ludicrous, at least, to me, since that is where the money is desperately needed and required to go.

On the surface, some of these changes may seem positive for Illinois. In a different year, when Illinois did not need to borrow money just to pay the bills, many of us would think these were important steps toward deinstitutionalization. Yet, digging deeper, community funding for developmental disabilities services sees an extension of the long-term care payment cycle, "saving" $15.9 million, and residential and day programs will now implement a one and a half month payment cycle, which "saves" $48.3 million. Thus, the increases for the Division of Developmental Disabilities equal, roughly, $29.3 million, while the cuts for the division are, approximately, $133.3 million. Even though I did not major in mathematics, I know the numbers add up to a staggering decrease in funding for the agency.

It is very difficult to make what happened with the Division of Mental Health seem even remotely palatable, since, as was discussed, spinning is best left to politicians. Stated bluntly, community services received a reduction of $90.7 million, which results in a 32.5% reduction to GRF community grants and an estimated reduction impact of 40% to 42% to community contracts. There is an FY11 proposed budget increase of $4.3 million to support the Money Follows the Person federal grant program. This is an incredibly important program, but any increases it receives are offset with the elimination of all non-Medicaid funded programs and an estimated 3850 job losses because of the closure of 23 of 87 community agencies. Based on this budget, I believe there is sufficient need to have great concern regarding the mental health service capacity within Illinois.

The Division of Rehabilitation Services appears to have escaped the "butcher's wrath" but, seemingly, only after a possible pound of flesh. The division's schools, including the Illinois School for the Deaf, Illinois School for the Visually Impaired, and the Illinois Center for Rehabilitation and Education-Roosevelt, all receive funding comparable to FY10. Centers for Independent Living receive funding similar to FY10 as well, though that means the personal assistant contracts are again funded at 80%, which, of course, limits what many CILs can provide to consumers in terms of personal assistant training and referencing among other supports.

The Home Services Program received an increase of $49.5 million due to estimated growth in FY11. Further, because of the SEIU labor agreement for personal assistants, $33 million is set aside for funding, while 3.3 million is reserved for health insurance for personal assistants. The Fletcher arbitration decision also requires the division to spend $3.1 million to convert contractual staff, who have been working in offices around the state, to full-time state employees.

Yet, even as it seems the Home Services Program is likely to increase in numbers and funding, the division decided there was a need to find "savings." Thus, Illinoisans with disabilities who use personal assistants now must juggle service parameters that pertain to the hours they are allotted for different activities. At this point, the budget calls for 12 hours a month for laundry, 17 hours a month for housekeeping, 18 hours a month for activities outside the home (such as doctors' visits), and 30 hours a month for meal preparation. Further, individuals attempting to become eligible for the Home Services Program must be Medicaid eligible and meet the asset limit of $2000, as opposed to the $17,500 limit in place during FY10 and for the past several years. Those already on the program will be grandfathered into the new changes.

I entitled this blog post "The Fierce Urgency of Now" for many reasons. Obviously, most of us know President Obama referenced that line during the 2008 campaign; and, hopefully, the majority of us realizes Dr. Martin Luther King Jr. made the line famous in his "I Have a Dream" speech. The language is still true today, and I believe we need to remember the reason for its initial call.

Dr. King said, "This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy." Just as we hear about and experience certain legislative or legal victories that require our state to move in a direction beneficial to the disability community, we discover the budget and its overwhelming burden. We suddenly feel that, even with a victory here or there, there is simply no way we can continually battle against bureaucracy, politics, and indifference. How can anyone expect us to keep fighting everyday without fail, only to face the behemoth of state government and its looming shadow that lurks over us?

I have only four words to answer that question. This is our time. If we fall into the trap Dr. King mentioned, if we believe we have time to sit and rest, if we believe that what happens at the state Capitol will not affect us for months or even years, we have already lost. We do not have the time for apathy. We do not have the time for self-pity. We do not have the time to tap out of the game because we feel a bit overworked. This is our time. If we choose not to take it, we all suffer and rightfully so. We have partners, we have friends, but we must lead the way ourselves. No one else can speak for us. No one else should speak for us. This is our time, but the clock is ticking.

UPDATE: After a week of wondering what was going to happen with HR 899, there is good news to report. Several disability rights advocates and organizations are taking part in a conference call to discuss new language for the resolution. Even with my cynicism and skeptical nature, I find this a very reassuring sign that two groups, which appear at first blush to be on opposite sides of an issue, are able to discuss reasonable ways to remedy a problem. There is no way to tell how the situation will evolve. Nevertheless, communication is the best way to break down barriers, and I choose to look at this event as a learning/teaching experience.

I applaud Representative Riley's perseverance in this area. I believe he has shown true evenhandedness and foresight in leading the way on this issue. I hope this sense of cooperation and fairness is a forerunner of what we, as advocates, can expect to see from other members of the General Assembly in both the House and Senate.

This has been quite a long blog post, and I appreciate your reading it to the end. There is much more to say, as there is much more to do. There is a managed care forum at Access Living on Friday, March 19, from 1:00 p.m. to 4:00 p.m. Jennifer Thomas is hosting the event, and I will be there along with many others to discuss current events surrounding managed care in Illinois. If you are in the area, it would be nice to see some of you and talk about various issues affecting us all.

Kill Bill, Vol. III

2010-03-05T20:00:00.002-06:00

Kill Bill, Vol. III

An interesting thing happened on the way to the Medicaid Reform Committee hearing yesterday. I was prepared to testify on behalf of HB 5113, a bill sponsored by Representative Mary Flowers, which would prohibit any state agency, including HFS, DHS, and the Department of Aging from using managed care providers or HMOs to pay for medical care for people receiving Social Security or benefits under other federal waivers. That may sound complicated, but it really is intended to kill the entire managed care pilot project proposed recently by HFS.

It was only after I realized I was at the wrong hearing room that I ran into Representative Chapa LaVIa. It was a fortuitous meeting, as she then told me the current state of her bill, HB 5086, which was heard in the Medicaid Reform Committee last week. Though it passed with only the requirement of some amendments being attached, she informed me the bill was going nowhere. She said the people in the Governor's Office had told her they were not going to work with her legislation. She felt her bill was likely dead even with passage from the committee. Therefore, she told me that she and, presumably, her cosponsors were rallying behind Representative Flowers' bill. Moreover, she wanted disability rights advocates to stand behind that bill as well. Her reasoning was simple inasmuch as she thought that if her idea for a task force to oversee the pilot project was a nonstarter, it was best to ensure the pilot project never had a chance to take root.

I took my newfound knowledge and headed to the proper hearing room in the Capitol, which was where the Medicaid Reform Committee was meeting. I was somewhat surprised that I was the only advocate, at least, from a disability rights perspective, in the room. However, after speaking briefly with Representative Flowers, I testified in favor of her bill, and it seemed to go well. Jim Parker, from HFS and speaking on behalf of the pilot project, testified in opposition to the bill, as did other representatives from the agency. Nonetheless, the bill passed out of committee, with the condition of attaching one safeguarding amendment, on a vote of eight to one with one voting present. Though a relatively minor victory in the broader scope of events, it was still nice to see the political process work in favor of what the majority of disability advocates feel is necessary.

Later that night, I took part in a webinar arranged by the Family Support Network, and its subject matter was, ironically enough, managed care and if it was right for the disability community. The guest speaker was none other than Jim Parker. It is important never to lose sight of the irony and humor inherent in all political activities. For two consecutive weeks, I have testified in opposition to Mr. Parker's pilot project, though I know he did not develop it on his own, and he claims no ownership of it for himself. Even though it seems that other disability advocates and I are sparring with Mr. Parker over managed care, I truly admire and respect him a great deal. It takes a strong individual to stand in the proverbial lion's den, as he did last week with other HFS personnel after the first committee hearing on HB 5086, while surrounded by somewhat frustrated advocates besieging him with questions. In fact, I find him a quite pleasant individual. Of course, he may feel quite differently toward some of the other advocates, including me, which is completely understandable.

I found the webinar interesting, if not entirely enlightening, only because I have heard much of the explanation in the last several weeks. I found it interesting that Mr. Parker spoke of the pilot project much less in terms of managed-care and much more in terms of integrated care. Perhaps, this is just a touch of spin, since integrated care has a much more positive connotation to it then does managed care. Nevertheless, it is difficult to argue with the concept of integrating into one system all the medical and long-term care needs of an individual, thereby allowing the person choice, continuity of care, access to specialists, and cost savings for both the person and the state. On the surface and even after digging a bit deeper, this is likely the kind of health care reform most of us want and, some would argue, most of us deserve. That is for another discussion, but the idea of integrated care is simply a good one and an interesting dynamic to consider.

Yet, as is always the case, that pesky devil lies hidden somewhere in the murky shadows of health insurance, state reimbursements, and evolving long-term care needs and plans. I think Mr. Parker believes the pilot project is a good idea and not something he is trying to force upon us. I have no reason whatsoever to doubt his integrity, nor would I. It seems to me he was assigned a Herculean effort to take a very large, statistically speaking, sample population and completely restructure the health care delivery system provided to individuals within that sample group. If anyone has taken statistics courses or read about the methodology used to test a hypothesis, it is clear Mr. Parker's job is a daunting one from a purely logistical perspective, not to mention convincing advocates it is a good idea.

Having said that, every time we, as a disability rights advocates, discuss the pilot project with HFS, we hear about its impending positive outcomes. We hear that our voices will be part of the discussion for the long-term care elements of the project. We hear that we will not be left out of the negotiating process and that HFS wants our input into making this delivery system, already scheduled to begin in October, the most beneficial it can be for people with disabilities. We hear that no harm will be done, and if it is, the state guarantees to correct it. Those sentiments make it much easier to believe this pilot project will succeed in the way the state has already planned it and that, for all of our concerns about state bureaucracy and politics getting in the way of quality services, this time is different, more focused, and considered very viable.

Yet, those same sentiments concern me greatly. I have conducted research and taken classes on statistics. By no means do I consider myself an expert on any of these areas. If anything, the opposite is true. Still, a person cannot take those classes and do that research without picking up a few things along the way. For example, I know every hypothesis tested is considered the "null hypothesis," which, basically, is the opposite of what you are proposing. Researchers need to show the opposite is not true before you can begin to believe—and do so even then without complete certainty—that the proposed hypothesis is correct. In other words, if I hypothesized the sky is blue, I would test the hypothesis that the sky is not blue, and, obviously, my original thought about the sky being blue would seem correct. However, researchers continue testing to make sure the sky also not green, purple, or even fuchsia, if you choose. The idea is to continue testing until you prove the most likely hypothesis is the one you proposed in the first place, even though there still may be no guarantee of its indisputable accuracy. That is likely a bad example and, perhaps, more than anyone wanted to know about hypotheses and "null hypotheses." I hope that it did present the basic ideas behind some research fundamentals, and I apologize if I just caused your brain to fog over. I do have that effect on people sometimes.

I mention all that not simply to discuss the joys of research. I go over the above details because, to me, it seems the state is approaching this serious problem of health care delivery and improving the Medicaid system from the wrong perspective. Obviously, in politics and government, there is no luxury to disprove the "null hypothesis," and, therefore, politicians and bureaucrats must use the best alternative available, if change is, indeed, the intended outcome. Yet, there is the idea of best practices and making sure whatever is done has a history of, at least, partial success. In this case, managed care does not have that kind of reputation, and it concerns me, as I have noted previously, that the state is taking a step backward instead of moving progressively forward in the considerations of health care delivery, particularly for people with disabilities.

The idea of integrated care is a progressive one, and it could provide lasting benefits for those receiving services as well as the state. Unfortunately, at this point, integrated care is merely a hypothesis, something the state wants to do or intends to do, and not a theory of what has been tested continuously and succeeded. In the webinar last night, there was a question regarding Vermont and the way it put together a plan that included integrated care, self-directed services, and other ideas that eventually served the state very well. However, that process took 10 years before it was taken from the experimental stage to the practical level for the entire state. The question pertained to whether Illinois would follow that model. Mr. Parker said that he hoped it would not take 10 years to move Illinois in that direction. I agree with that assessment in that one can be too careful at times and miss a window of opportunity. Simultaneously, if plans are rushed and important measures are only tested halfway through the process, the results can be disastrous as well, causing more windows of opportunity to close.

There are countless programs from which Illinois can choose to implement a more effective and cost saving health care delivery system, which will also improve Medicaid reimbursements and the entire waiver system. As advocates, we need to make sure we are constantly challenging conventional thinking, while also providing valid alternatives that do not imply we enjoy or support our current health care system in Illinois. We have to act proactively and state our cases for other ideas instead of only being against something. Likewise, the state, in this case HFS, has to remain open to ideas that others—or we—present to it. I have no reason to believe that we cannot offer more alternatives and that the state will not listen. In fact, we actually may be able to use this moment, which might seem like an impasse, to cause a complete paradigm shift. I realize that likely sounds like wishful thinking right now. Yet, how do we develop and flourish if we are not always moving progressively forward? Our advocacy efforts, like the state's decision-making process, either atrophy or grow stronger, depending on how we use them.

Word Salad with Attitude Dressing on the Side

2010-03-04T00:44:00.000-06:00

Word Salad with Attitude Dressing on the Side

I feel as if I have given myself a very difficult writing task this time. To cover what I want to say, I must be provocative but thoughtful as well. I need to appeal more to people's reasonable side, while discussing very emotional topics, which is a very delicate line to walk. Of course, I just could be worrying about it too much, since, after all, according to some, I am cursed.

For those of you who do not know, on February 18, Virginia Republican State Delegate Bob Marshall held a press conference to state his ardent opposition to state funding for Planned Parenthood. He feels the organization is far too closely linked to abortion, which he believes is wrong, as is his right. Still, his pro-life stance did not garner him national attention. It was something he said during the press conference that caused more than a few eyebrows to rise. He said:

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children. In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest."

Now, I learned a long time ago that, if you wanted to keep your friends and not rock the boat, you should never discuss politics or religion. Yet, as I have already mentioned both, I think I should just go ahead and discuss some of the ramifications of this statement as well as others like it that have recently caused ripples within the disability community nationwide. However, let me say this first. I am not writing about abortion, religion, or even partisan politics in so much as those things pertain to people with disabilities. I only want to concentrate on what was said and, perhaps, why it was said.

As for Marshall's comments, he issued an apology of sorts. He said he never made those remarks or, at least, he never meant them to reflect negatively on people with disabilities. Of course, I did watch him say those exact words on the Internet, and they did not seem taken out of context. In fact, I actually believe he intended no harm by what he said. I think he spoke what he believed and what he thought was appropriate for the setting. If one's intentions are good, how can he or she be held accountable if someone else interprets it in a way it was not meant? Unfortunately, therein lies the problem, in this case for State Delegate Marshall.

This Virginia politician did what so many other people have done over the centuries: equate disability with religion and/or some kind of sin or punishment from a higher power. This is not the first time this has happened, and I guarantee you it will not be the last. I cannot tell you how many times I have been in a church setting, only to have people I did not particularly know tell me they would pray for my healing. Though I truly never want to hurt anyone's feelings, I eventually came to the point where I told them I did not need to be healed. That is always good for an awkward moment.

Nevertheless, the dilemma persists in that when religion and disability meet, the former feels the need to "fix" the latter, even though those of us with disabilities do not want anyone to "fix" us. Generally, we take pride in who we are, and when people view us as flawed or somehow not meeting some ambiguous version of normalcy, we take a measure of offense in that. If a white person approached an African-American and said, "Let me help you and make you white like the rest of us," does anyone believe that would not be considered discriminatory? I think it is safe to say most people would see it that way. Yet, we, as people with disabilities, are classified differently. Typically, it is for the sole reason that we make people uncomfortable, that it is difficult for some people without disabilities to interact with us, or that we elicit some subconscious fear about how it could have been them and not us using items like wheelchairs, canes, hearing aids, or (cover the children's eyes) colostomy bags.

Regarding State Delegate Marshall's comments, it has less to do with religious belief than with being valued as a person, in this case a person with a disability. We should not, do not, and will not hold our heads in guilt and shame for who we are. Moreover, I do not believe it matters if people view us as a blessing or a curse. In fact, many of my friends with disabilities would never be confused with a blessing. Yet, that diversity makes us individuals, instills in us a sense of pride, and, simultaneously, gives us a sense of community and belonging that I really cannot adequately describe with simple words.

Disability pride is a real thing, a tangible manifestation of our belief, as people with disabilities, that we should not feel shame or fear because of our disabilities. In fact, we need to embrace our disabilities and show others our existence is equally as vital and valid as theirs is. Sarah Triano, perhaps, stated it best when she wrote the definition for "Disability Pride" for the Encyclopedia of Disability. She wrote:

"Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride. It is a public expression of our belief that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience. Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group's assumption that there is something inherently wrong with our disabilities and identity."

Since, as I said, this is a difficult piece to write, there seems to be no natural segue to move from a discussion about disability as God's punishment to an examination of the recent uproar regarding the use of the R-word. That, in itself, sounds far too clinical. Yet, this issue will not leave me, personally, alone. It may be because I write as much as I do and value language and the words that make it what it is. More likely, it is because these recent events have upset me greatly, as they have for many people with disabilities.

To give a very brief background, the issue began last August when President Obama's Chief of Staff Rahm Emanuel addressed a group of liberal activists who were upset with the pace of health care reform. This is the only time I will use this word, but in this case, it is integral into understanding why this controversy started. In response to the activists' laments, Emanuel said their complaints were, "(expletive) retarded." It is interesting, if not ironic, that the media reported the quote using the word expletive but repeating the R-word.

Yet, a few weeks ago, this comment, for which Emanuel has apologized, caused former vice presidential candidate Sarah Palin, who has a child with a developmental disability, to call for Emanuel's resignation and a much stronger apology to all individuals with developmental or intellectual disabilities and their families. This act on Palin's part might have been partially politically motivated, but it was also necessary. Emanuel never should have said anything like he did, and his apology was indeed necessary. I applaud Sarah Palin for standing up for her child and other children, as well as adults, with developmental disabilities. I would have found virtue in what she said, if only she had remained consistent.

When conservative radio talk show host Rush Limbaugh used the R-word multiple times in very derogatory fashion the next day, Palin was noticeably silent. She claimed Limbaugh was using the word in a satirical way and not in the same context as Emanuel used it. Yet, use it Limbaugh did—repeatedly and with no apparent sense of regret whatsoever. The fact that Palin did not equally criticize Limbaugh's comments made it much easier for many people to see her initial outrage as purely partisan. That is a true shame, for if she did feel insulted and degraded for her child and others with similar disabilities, she lost the right to claim those feelings by not remaining consistently against the use of the R-word, regardless of political stripe.

Again, as with Marshall, I am not writing this to discuss Emanuel, Limbaugh, or Palin. I am not concerned simply about the use of the R-word, though I find it repugnant and demeaning above many other terms. I write this about language, meaning, and attitude. Marshall did not use the word disability. Instead, he chose the more stigmatizing term "handicap." I find that equally as demeaning as the use of the R-word, but I am not the language police. I am a person with a disability and proud to say that I am. Scholars can debate how the usage of words changes over time. I am much more concerned with the attitude of our society, which, I fear, has not changed nearly as much over the last 200 years.

I do not want to be defined by someone else's idea of what my disability means to them. I do not want medical experts, religious leaders, or linguists to decide who I am, based on what I can do or, in their minds, what I cannot do. I do not want to be compared to a person without a disability and have that used as a standard for my functionality within society. I want to be judged on my merit and worth as a human being. If people believe I am arrogant, worthless, or belligerent, then, I welcome them to make their case to me and explain why they believe that. However, those same people cannot use my disability as the basis for their argument. If I am arrogant or compassionate, mean-spirited or kind, it has to do with my makeup as a person. It has to do with my personality or lack thereof. Yet, it has nothing to do with my disability. I am a human being with all the frailties that come with that label, but my disability does not lessen my standing as a human being with all the rights and responsibilities that also come with that designation.

We need an attitudinal shift in this country to see people with disabilities as individuals with pride and dignity in who they are. That shift, though, does not need to come only from those people without disabilities. It has to begin with all of us who have disabilities. Advocates and ordinary citizens alike must stop owning the negative stereotypes and stigma too long associated with having a disability. Instead, we must own our equality, our dignity, and our rightful place in the mainstream and forefront of society, no longer lurking in the shadows because of fear of how people without disabilities might view us. We have to accept ourselves and celebrate our own culture, identity, and heritage, as Triano wrote. Dignity is not a concept offered only to a certain class of person. It is a reality of being, guaranteed to us all, if we only seize it and never let go.

Yesterday, March 3, 2010, was End the R-word Day , and on its official website, more than 99,000 people have pledged to stop using the R-word in daily conversations. I took the pledge, and I think it is a wonderful opportunity to raise awareness of the issue. Yet, there is a bigger issue at stake, and it involves more than ending the use of one word, as important as that is. Changing mindsets both inside and outside the disability community is likely the most important thing we can do. We need to change the attitudes of those without disabilities, helping them see those of us with disabilities as their neighbors, their friends, and, most important, their equals. However, we also need to change the attitudes of people with disabilities and help ourselves stop believing the lie that we are somehow less important than anyone else is. We have opinions, we have relevance, and we have meaning. We are people with disabilities, and we are proud.

Spin Cycle

2010-02-26T17:27:00.000-06:00

Spin Cycle

Oh, I do love politics. It never ceases to amaze, amuse, and fascinate. Yesterday, February 25, advocates and interested parties filled a hearing room on the fourth floor of the Stratton building in Springfield. Everyone was there for a meeting of the Illinois House Medicaid Reform Committee and for a lively discussion of the Department of Healthcare and Family Services' (HFS) managed care pilot project. For a political junkie and disability rights advocate like me, the event itself did not disappoint.

Almost everyone in the room was there in support of HB 5086, a bill sponsored by Representative Chapa LaVia, which would create a task force to oversee any managed care programs that would affect the elderly and people with disabilities. Further, the bill's intent is to allow stakeholders, especially those considered in legislative terms as "aged, blind, or disabled," to have a real seat at the table and give input on how HMOs should treat medical as well as long-term care issues for these populations. The bill actually gives voice to direct concerns raised by individuals impacted by the plans of the managed care system. Further, the task force would evaluate Illinois' readiness for any program like this, which is a very important question, in my opinion, especially considering the exceedingly fast timeframe with which HFS wants to install each section of the pilot project.

Barbara Prichard from the Campaign for Real Choice in Illinois, Jennifer Thomas from Access Living, Amy Walker from Illinois Voices, Janet Stover from the Illinois Association of Rehabilitation Facilities, and I, representing the Springfield Area Disability Activists, testified in support of HB 5086. Others testified as well on the potential problems of managed care and how this pilot project was not a good idea, particularly from the perspective of the lack of input from those who would receive these services. I think everyone made very valid points and articulated their positions quite well. What was equally satisfying was how the committee seemed very receptive to our concerns and arguments against managed care in general.

After the advocacy testimony, the committee gave representatives from HFS a chance to defend their position. (For me, this was the entertainment portion of the program, and I mean that with no disrespect to anyone at HFS.) Many of the representatives on the committee expressed serious concerns about how HFS had moved the pilot project along with no approval from a General Assembly task force set up last summer. One could argue it was a very contentious exchange, though very short, as the legislators had to leave for regular session in the House. Nonetheless, as much as I disagree with the HFS idea for the pilot project, I felt somewhat sympathetic toward them because of the grilling they received from the representatives, though my opinion did not change about their proposed plan.

The most interesting aspect of the hearing, not to mention the reason why most of you would read this blog post in the first place, happened afterward, when the legislators had left the room and only the advocates and HFS representatives remained. I am quite sure it seemed like a bombardment of questions and comments to those from HFS, but it was our chance to ask some real questions to some of the people behind the decision for the pilot project. We did take full advantage of the opportunity, and, thus, the spin began.

As we discussed how HMOs would handle section one of the pilot project, which focuses primarily on medical care, and how they would draft plans for sections two and three, it occurred to me how truly complicated this issue is. A simple post on a blog cannot do justice to all the intricacies involved with the pilot project as well as the concerns surrounding it. We discussed long-term care issues and how HMOs, particularly the ones involved with the project, had never dealt with providing that kind of care. We spoke to the need for durable medical equipment, such as wheelchairs, and we discussed how people with disabilities currently have the ability and choice to hire, fire, and manage their own personal assistants. Many of us fear that will not be the case under a managed care system, especially as sections two and three of the pilot project read in the RFP. The HFS representatives told us how the bigger hospitals were anxious to become part of the project, while advocates pointed out the fact that if managed care becomes a statewide health delivery system, the bigger hospitals, most often located in major metropolitan areas, would have no way of helping anyone in the most southern parts of the state.

These are all valid concerns, and, to their credit, the HFS representatives addressed every question and concern as best they could. The only problem with that fact—and it cannot be understated—is that there were some questions for which they had no answers. This is not meant to reflect poorly on the preparation of the HFS personnel. Instead, it speaks directly to the lack of planning of this entire process, something not lost on the representatives of the committee, as they collaborated extensively on that point during the hearing. However, this lack of planning does foreshadow possibly very negative consequences of a pilot project that, under the right circumstances and oversight, could prove worthwhile. Having said that, I am not willing to risk all the historically harmful aspects of managed care simply to save the state money because politicians suddenly find electoral benefit in doing so. More to the point, the HFS representatives freely admitted the pilot project very well might save the state no money whatsoever. For that, I was very thankful for their candor, if not the irony attached to it.

The HFS representatives invited all of us there to a meeting with them and the HMOs to discuss our concerns as well as to educate the insurance companies on how members of the disability community do not represent their "typical" customers. Again, I felt this was a good faith effort on the part of HFS. Yet, it did come on the heels of debate on HB 5086, which would create a task force to facilitate those same kinds of meetings and offer education and training to the HMOs. My meaning is simply that I will be happy to attend a meeting of this kind, if it actually takes place. As most of us know, the words of many bureaucrats and politicians, especially when spoken under moments of pressure, can change drastically when the pressure is relieved. As I told some people there, I am cynically optimistic about the prospects of any meeting, while remaining a pragmatist in terms of Illinois state bureaucracy.

This blog post may not seem very upbeat to some of you, but, in reality, I believe the hearing was rather productive. Not every advocate may share the same thought regarding each part of the pilot project, but, in that, we show the true diversity of the disability rights movement in Illinois. We will not always think with one mind or even speak with one voice. As long as we all agree to work for what is best for all Illinoisans with disabilities, we can debate thoughts, opinions, and approaches until we come to the most beneficial outcome for everyone involved.

Make no mistake; I do not believe this is the end of the issue in terms of managed care or this pilot project. We, as disability rights advocates, have much more work to do, and we must be vigilant in case the situation takes an adverse turn. I believe we may still have a lengthy fight on our hands, and that fight is more against a system than a group of people or even a state government. We need to be prepared for the fight. Being an optimist, even a cynical one, does not mean one loses sight of the ultimate goal, which is still equality and freedom of choice in every aspect of life for people with disabilities. Hard work and vigilance never hurt a movement. They can only provide focus and, hopefully, a "fire in the belly" to advocates, as we continue to allow nothing about us without us.

Managed Care, Managed Lives

2010-02-21T21:40:00.003-06:00

New Directions

It has been longer than a month since I last posted on this blog. A lot has happened during that time, including my graduation with my master's degree in political studies. Yet, I have also come to other conclusions about my life, one of which is the direction this blog will take.

I intend to try a novel approach, which is writing fewer words more often. I realize I have said this before, and I have not done it. This time, I fully intend to accomplish my task. For the moment, I will only include the political round up if there are too many issues to discuss at one time. I also will not make it as long as the major article in the blog. Finally, though it pains me to say this, I am temporarily putting the "From the Gridiron" section of the blog on hold. I am tremendously proud of the way the Cowboys performed this year, but I truly want to focus on other issues for the time being. Moreover, I am not going to try to tackle every topic at one time. I suppose I finally realized this blog is not going to end tomorrow, and I do not need to write as if it is. Consequently, you would have heard enough from me, and I will quit blabbering about the blog and start blogging.

Managed Care, Managed Lives

If you have been following events in Washington DC, aside from the snow in February, which seemed to perplex the entire federal government, there are rumblings that the public option might have resurgence in the health care reform bill Congress is trying to pass. For people like me, who support the measure, it is a very encouraging sign. However, back here in Illinois, where the political rubber meets the road in our everyday lives, our state government seems to have taken the vehicle of health care reform and put it squarely in reverse.

Since September 2009, the Administration and the Department of Health Care and Family Services (HFS) have been developing a pilot program for an integrated/managed care HMO system. The program would affect 38,000 Medicaid eligible adults who are, according to the parlance of government, "aged, blind, or disabled" in DuPage, Kane, Kankakee, Lake, Will, and suburban Cook counties. Yet, even as this program was under development, neither the administration nor HFS sought any input from stakeholders, i.e. those who would be affected by this program, until early in December 2009. Then, as the story gets even better, just two months later, on February 5, HFS issued an RFP to contract with two HMOs. Ostensibly, this would get the ball rolling on the pilot program after the people directly affected only receive two months for input. Though public options may still have life in Washington DC, public viewpoints appear to be optional in Illinois.

Many of you may think this is a rather innocuous issue and wonder why I am even mentioning a state pilot program, especially since these things only affect a relatively small number of people. Though this technically may be true, letting issues go unaddressed, particularly those involving government, can lead to a steep price. For the sake of hyperbole, take McCarthyism or the Iraq war. If people had spoken out about the things earlier, how many careers or lives would have been saved? I realize I may be using extreme examples, but they sometimes work better to drive home a point than anything else.

In my opinion, managed care is not a good or reliable way of insuring people's health and well-being. Some argue that it saves money, but I will say, "At what expense?" People with disabilities need primary care physicians who understand the role disability plays within the entire framework of their picture of wellness. Managed care does not guarantee that a person can keep his or her own primary care physician. More often, the case becomes one in which the HMO restricts the choice of primary care physicians or makes it impossible to keep an existing doctor due to low capitation rates. Will this save money? It is quite possible that it may. Yet, will it also cause major disruptions in the lives of people with disabilities or elderly citizens? The answer to that question is an emphatic, "Yes."

HMOs are not fond of specialists. Alternatively, people with disabilities often need these specialists for a variety of reasons. I can attest to that fact personally, as I have three other doctors besides my primary care physician. I am not in bad health, and I may only see these specialists once or twice a year. Regardless, I need these physicians in my life, as do many other people. Yet, managed care typically limits access to specialists, and those who are approved may have little knowledge of a certain person's disability or condition. In some cases, this could be life threatening, though still cost-effective. Does anyone else see the irony in that statement?

Specifically, in the RFP issued by HFS, there is a discussion of medical loss ratios, which typically never ends well for people with disabilities. Typically, if the HMO deems a person’s health care costs too high, services are cut, or the person no longer remains under the managed care plan. Health care costs for people with disabilities are high. This is especially true when you include such necessities as durable medical equipment, which includes power wheelchairs, Hoyer lifts, and specialized exercise machines. When decisions for what it is medically necessary are ripped from the hands of doctors and patients and given to bureaucrats, the result is inadequate care leading, ultimately, to increased costs. Holding down costs on paper in the short term may look good to administrators and politicians, but it could also lead to the purging of people on HMOs rolls because long-term costs are much higher.

What troubles me the most about this entire situation is the lack of choice involved for those taking part in this pilot program. Consumer control is at the heart of the disability rights movement, whether it pertains to health care, employment, or accessibility. This concept is totally lacking from this RFP. There is some fundamental language within the document regarding participant input, but from what I have seen and read, nothing is guaranteed to be the consumer's choice. In fact, the RFP steers far enough away from personal choice that it bears all the hallmarks of returning to the old days of the medical model, which is a very frightening concept indeed. It should give one chills to think that bureaucrats would view individuals more based on their diagnosis than their humanity. I know it does that for me.

There are more examples where managed care proves to be the wrong choice, especially for people with disabilities. However, there is hope a situation like this, a pilot program like the one proposed, would receive the oversight it so desperately needs, if not a complete dismantling of the entire idea. On Thursday, February 18, I attended a press conference at the Capitol, during which State Representatives Linda Chapa LaVia, Esther Golar, and Lisa Dugan discussed HB 5086, a bill proposed by Chapa LaVia and sponsored by Golar, Dugan, as well as fellow Representatives Naomi Jakobsson and Sara Feigenholtz.

At the press conference, Representatives Golar, Chapa LaVia, and Dugan addressed the main goals behind HB 5086. The bill amends the Aid to the Aged, Blind, or Disabled Article of the Public Aid Code and creates a task force consisting of consumers, stakeholders, legislators, State agency staff, and advocates to address issues that, for too long, have been left only to the decision-making abilities of bureaucrats and politicians. Without direct input from the populations most affected by pilot programs like the one proposed by HFS, there will be no one to "speak truth to power." Advocates and consumers are rarely invited behind closed doors where politicos make policy decisions or, as the old saying goes, "where they make the sausage." It is time to end that practice and bring transparency to the entire process. The other old adage about sunshine being the best disinfectant is true here as well.

The task force will assess whether or not Illinois is ready to develop a managed care or integrated care pilot program that covers the elderly and people with disabilities. Further, it would develop a concept paper delineating the core values to serve as the foundation for such a program. The task force would then work with HFS to plan, design, and implement the kind of pilot programs best suited for Illinois. Finally, these types of programs would receive oversight, as the task force would be charged with ensuring proper implementation for any idea affecting the communities of the "aged, blind, or disabled."

Perhaps, an even more important duty for the task force is to do whatever is possible to stop the HFS and Administration's plans to move ahead with the current pilot program. Groups like the Illinois Association of Rehabilitation Facilities, the Campaign for Real Choice in Illinois, and Access Living of Chicago agreed the process to develop this pilot program did not include the questions, concerns, and recommendations from those individuals most intimately involved in its development. Equally distressing is the implementation of the program's timeframe, which contradicts direct evidence from other states that have also attempted managed care models for both medical and long-term care for the elderly and people with disabilities. As Jennifer Thomas, the Personal Assistant Coordinator at Access Living, stated during the press conference, other states with programs similar to the one HFS is proposing have dramatically limited long-term care services in the community, with estimates showing Wisconsin residents, for example, lost 30% of their home services hours.

It is clear why this task force is needed. It is clear why HB 5086 must pass. It is clear why this pilot program is a bad idea. Yet, it is not clear that many policymakers or politicians in Illinois understand the reasoning behind the concerns being raised. As with everything in politics, this situation comes down to money. The primary argument for the pilot program is that it will save money for the state.

Yet, why do this now? Why, during an election year, is it imperative for the state to find creative ways to save money, primarily on the backs of people with disabilities? Why is there suddenly such a rush? Would the same people proposing this pilot program tell me this economic crisis and the lack of proper Medicaid funding did not exist last year or three years ago? Even if this five-year pilot program shows some semblances of success for the people in the six affected counties, will that be enough “proof” for decision-makers to change the health care delivery systems for all Illinoisans with disabilities? Further, what qualifies as a success? Likewise, is one pilot program enough effort to reverse the lack of leadership Illinois has seen over the last several years? Moreover, was managed care, with all its pitfalls, the best choice or the only choice available to decision-makers? I will leave others to answer those questions, but I have my own ideas.

It was very gratifying to see Barb Prichard and Nick Quealy-Gainer from the Campaign for Real Choice and Jennifer Thomas and Tom Wilson from Access Living at the press conference. Barbara and Jennifer, in particular, added the voices of advocacy that, otherwise, would have been missing. Even Representative Golar stated, after Jennifer spoke, how important it was to hear from real advocates at a press conference as opposed to simply typical political speak. I only wish more advocates had made a bigger presence at this critical time.

It strikes me that, in the midst of everything else happening in this state and around the nation, no other issue may be more important to the disability community in Illinois than this managed care pilot program. We could debate funding and institutionalization, but at the crux of it all, if state politicians view this program as a success and as a viable means of saving money, we all could suddenly find ourselves faced with managed care, lack of choice and participation, and a totally different system that views us more as statistics than individuals. At that point, all the debates would end, and we would find ourselves looking at each other, wondering what just happened, what just went wrong.

If we are truly advocates, we were born for a time like this. This is our calling, our reason for getting out of bed in the morning. If we really want to fight against injustice, I can see no better adversary than what stands before us. I am not trying to malign HFS or even the HMOs that might receive the contracts from the state. They have their jobs to do, as do we. Jennifer Thomas said that, historically, people with disabilities believe in the credo of "nothing about us without us." I believe that to be true, but more importantly, I want that to be true. We cannot idly stand by and let this situation become a problem, which then becomes a dilemma for which we have no answer. This could easily be the most important issue for disability rights advocates in this state for the next year.

We need to fight, and we need to do it now. Time, politics, and other agendas will not wait for us to become organized. Contact your state legislators and tell them what you think. Contact HFS and tell the agency you want to provide input on what you think of the managed care pilot program. If they tell you the time for comment has passed, ask to speak to someone involved with the program and make your feelings known. Write letters, send e-mails, and do the things grassroots advocates do to make a change when a change is desperately needed. This is our time. This is our stage. This is our opportunity. We cannot let it slip through our hands.

There is a meeting of the Illinois House Medicaid Reform, Family & Children Services Committee at 10:00 a.m., Thursday, February 25, in Room 413 Stratton Building, Springfield, Illinois. HB 5086 is on the list of bills to be discussed. All advocates available and interested in changing this managed care pilot program need to plan on attending. This is our chance to let voices be heard.

Patriotism with a Public Option

2009-11-12T15:01:00.040-06:00

November 12, 2009

Introduction

Let me start this post with a few housekeeping matters. I am definitely going to try to limit what I write this time, as I realize six or seven pages can seem a bit overwhelming. Frankly, there is so much about which I could blog, but I will have to do it in shorter but more frequent posts. I'm sure many of you will be thankful for that. Yet, I cannot guarantee this post will be the beginning of that trend.

Veterans Day for All

This blog post, however, is dedicated to veterans, both present and past, who have done more heroic and seen more horrific things than my feeble mind could ever imagine. Though you may not get this blog post update until today, it was written on Veterans Day with the full weight of what that day encompasses in the forefront of my mind. However, even as we celebrate what veterans have done for us, we must realize what we have not done for them. That leads me to my next point.

I discovered just tonight that a recent Harvard study showed that 2266 veterans died last year because they did not have health insurance. Many of these veterans could not afford private health insurance and, yet, were not considered "disabled enough" to receive benefits from the Veterans Administration, according to Paul Rieckhoff of

Iraq

and Afghanistan Veterans of America (IAVA). There is a bill in the Senate at this very moment, which could ease some of these issues for our veterans. Unfortunately, Senator Tom Coburn (R-OK) has put a hold on this legislation, which effectively ends its progress toward becoming law until this senator is satisfied.

The legislation is Senate Bill 1963, entitled "The Caregiver and Veterans Omnibus Health Services Act." This bill enhances VA health care for female veterans, allowing for new training for VA mental health providers on how they can better serve veterans who experienced military sexual trauma. It supports family caregivers of veterans with severe disabilities by giving them access to counseling, support, and a living stipend. It expands mental health services to rural areas where veterans often have to drive hundreds of miles to seek such care. Further, it improves traumatic brain injury care and provides additional programs for homeless veterans.

Despite all these potential benefits, Sen. Coburn is playing politics with this bill. Nearly every veterans group in the country supports the legislation, and it is bipartisan. Still, Coburn sees fit to stall this legislation until he believes the government can adequately pay for it. He also thinks it is wrong that this bill only applies to Iraq and

Afghanistan

veterans.

I would remind the senator nearly 5000 Iraq and

Afghanistan

veterans have already paid for this bill with their lives. Does he believe the veterans who came home deserve to pay more than they already have? Many now have newly acquired disabilities with which they will have to live and adapt for the rest of their lives. They have suddenly entered two minority groups, one of which I am quite sure they thought they would never see. I am convinced, despite the senator's resistance, that our government can find the money. In fact, I am equally certain both sides of the aisle will agree it is our moral and patriotic duty to do so. For more information, go to http://iava.org/and click on the Legislative Dispatches tab.

Option Routes

Last Thursday, November 4, I went to a rally here in Springfield sponsored by MoveOn.org. We were trying to gain support from Rep. Aaron Schock on the Affordable Health Care for America Act, which was set for a vote on Saturday night. It barely passed by a vote of 220-215. (If you know me, you will not be surprised that I watched the entire voting process on C-SPAN until the wee hours of the morning, which is one reason this post is late in coming.) One Republican voted for the act. It wasn't Schock, though he was voted Hottest Congressional Freshman by Huffington Post readers in case you were wondering. The Republican who did vote for the health care bill was Louisiana Rep. Anh "Joseph" Cao, who comes from a very poor and predominantly Democratic district. Apparently, those of us in Schock's district are not poor enough or Democratic enough. Yet, I digress.

Something that really caught my attention at the rally, which received quite a bit of support from passersby, was the lack of knowledge many people displayed regarding the public option in the health care bill. I don't expect people to follow politics as incessantly as I do. In fact, if people did, it would truly frighten me. Still, I was surprised that people asked us about signs supporting the public option and this thing called "choice." To me, and again, consider the source, this was not a tremendous leap in logic. Then, I realized people had lives and do not necessarily have time to do endless Internet searches on the public option, its pros and cons, and who gets affected most by it.

Therefore, I thought I might do that myself for those who have questions but not the time to get them answered. This is my attempt to explain the public option in simple and straightforward terms. It will not be complete. It will not satisfy many people. It will come from a liberal or progressive perspective. Further, I will not be addressing the entire bill, particularly its funding sources, the expanded agencies, or any other controversial aspects of the legislation. Yet, if this explanation helps just a few people, I think it will be worth it.

First, it is necessary to say this. By definition, the public option is optional. No one needs to worry about being forced to accept some government program that will tell you where and when you can go to receive health care. It is simply a proposed health insurance plan offered by the

U.S.

federal government as a Qualified Health Benefit Plan. No one would have to take it, and as it stands currently, most people would not even qualify for it.

So, you ask, who does qualify for it? Moreover, if it is a government plan, who pays for it? First, you have to be a citizen, as undocumented immigrants are not covered in any way by this bill via the public option or any other process. If you are a citizen whose employer does not cover you with their insurance policy, you could choose the public option. If you are not covered by any other state insurance plan, you could choose the public option. If you do have insurance through your employer but want something different or better, you could choose the public option, though many in that situation will not. (Trust me that this is not going to turn into a Jeff Foxworthy routine.) As for how the public option is funded, it is financed completely through premiums paid by those getting the coverage, though the premiums would be far lower than private health insurance premiums and likely based on some kind of scale based on a person's ability to pay. I hasten to add that last point is strictly based on my interpretation of how someone would pay premiums. Further, in the House bill that just passed and in the Senate Health, Education, Labor, and Pensions Committee bill, there are clauses that require repayment of "seed money" to the Department of the Treasury over a 10-year period. This means taxpayers are not on the hook for the public option, though I am sure many of you will disagree.

The idea of choice comes into play when you consider that many states have only one company or a small set of companies controlling the entire local health insurance market. There are no antitrust rules in place to govern health insurance companies as there are for nearly every other business venture in the nation. That means health insurance companies have very little competition and, consequently, very little reason to lower their rates. Since there are only five or six major health insurance companies in the country, it does not matter that much to the other companies if one company controls the entire health insurance market for one state. Another company might control a different state. What this situation does not do, however, is give the citizens of that state any choice in which health insurance provider they can choose. The public option would change this.

The public option provides competition to insurance companies but choice to consumers. Health insurance companies argue that without a profit motive or a reason to make money, which the public option does not have, there is no guarantee the government will cut waste, and private insurers will be forced out of business in the process of trying to compete. The counter to this argument, however, is that traditional market competition does not exist for health insurance companies. This is because insurers compete by risk selection, which means that the most successful companies are the ones that do the best at denying coverage to those needing it most, according to New York Times columnist Paul Krugman. In other words, if you are poor, have a pre-existing condition, and come from a high-risk population, health insurance companies very likely will end your coverage or deny you any insurance in the first place.

The public option does not deny people coverage based on pre-existing conditions or ability to pay. Moreover, the health care bill passed by the House last weekend outlaws denying coverage based on pre-existing conditions by any insurance company. As for the public option forcing competition with the insurance companies, most dyed in the wool capitalists actually favor the idea of competition, unless, of course, they are trying to form monopolies like, for example, health insurance companies. Thus, perhaps, all the opposition to the public option stems from the fact that the health insurers and those politicians receiving generous donations from those same companies really just like the status quo and want monopolies to stay in place if for no other reason than sheer greed. It really could be that simple, and I freely admit the public option will tamper with that plan.

Alternatives to the public option include health insurance cooperatives or co-ops, "trigger" plans, and "opt-in" and "opt-out" systems. Explaining these other options often muddies the waters for people. I will only give brief examples of these three alternatives to avoid any more confusion. First, co-ops would need federal money to make these private nonprofit health insurance entities viable, meaning large enough and established enough to make them competitive and bring them into the health insurance exchanges with traditional health insurance companies. However, co-ops would likely only be statewide, which immediately calls into question their power to compete and ability to grow large enough to reduce health care costs in relation to private health insurance companies. These factors make this alternative look less likely all the time.

Instead of statewide public plans, Senator Olympia Snowe (R-ME) favors a "trigger" that would cause a plan to take effect at some point in the future in certain states that do not have more than a predetermined number of private insurance companies. Of course, nothing would prevent health insurance companies from breaking themselves into many smaller versions of the parent company when the time came for the "trigger" to take effect, thereby eliminating the need for a public option. The "opt-in" system allows states to choose if they want to institute a public plan or not, which could leave citizens in states with less generous governors and legislatures from ever receiving a public option. The "opt-out" system would mandate states to offer a public option for a set period but allow the governor and state legislature to end the option after the time expires, assuming, of course, they felt very secure in their chances for reelection.

This can be a very dense subject, and it really isn't very easy to inject any humor into it. Of course, since we are discussing life and death issues, humor really should not play a factor. Nonetheless, I hope this hodgepodge of an explanation makes some sense. I truly hope it didn't confuse anyone that much more. What I just listed about the public option likely will not be in the final bill exactly like this after the House and Senate each pass their respective measures. Assuming the public option is still there, it will have many changes to it, but we will cross that bridge when we come to it.

Political Round-up

This portion of the blog will touch on different areas in politics—on a national, state, and even local level—that interest and/or infuriate me. However, I will not usually spend an inordinate amount of time dwelling on them. Below are a few things that come to mind this time around the horn.

· The Community First Choice (CFC) Option serves as the precursor to the Community Choice Act (CCA), which would require state Medicaid plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals. The CFC Option emerged as a way to make progress on home and community-based services and supports under Medicaid and a way to lay the foundation for later enactment of the CCA. The CFC Option would encourage states to provide home and community based services by providing an increased federal share of Medicaid payments. However, if a state chooses the CFC option, they would have to adhere to its higher standards (no caps on services, no waiting lists, and no geographic restrictions.) The CFC Option is estimated to cost $6 billion over 10 years. The Affordable Health Care for America Act, the health care bill passed by the House, included a statement of support for the CFC Option, which means the House wants it incorporated into the final bill between the House and Senate. This is a very good thing for people with disabilities, especially those living in institutions.

· The Community Living Assistance Services and Supports (CLASS) Act was also included in the Affordable Health Care for America Act. This is a major victory for people with disabilities who want to live independently without all the barriers presented by government bureaucracy. Most Americans with significant disabilities have one option for coverage that supplies them with critical services, such as housing modifications, assistive technologies, transportation, and personal assistance services, and that option is Medicaid. The reliance on Medicaid for services essential to independence creates a strong incentive for them to “spend down” assets, reinforcing cycles of poverty and unemployment. Medicaid pays 50% of the costs of long-term services, and increased expenditures on long-term services will likely add $44 billion annually to the cost of Medicaid over the next decade. The CLASS Act offers a chance to break the cycle. It will create a new national insurance program to help adults with significant disabilities to remain independent, employed, and active in their community. Financed through voluntary payroll deductions (with opt-out enrollment like Medicare Part B), this legislation will help remove barriers to independence and choice (e.g., housing modification, assistive technologies, personal assistance services, transportation) that can be devastatingly costly by providing a cash benefit to those who are eligible.

· From Jennifer Jacob Thomas and Amber Smock of Chicago ADAPT:

"As a result of the economic recession and a poor state budget, for several months disability advocates in Illinois have been battling threatened cuts to our vital Home Service Program (HSP). HSP provides critical personal attendant hours to people with disabilities across the state. HSP is a program that belongs to our Department of Rehabilitative Services, a division of our state Department of Human Services. To save about $12 million, DHS and DRS decided the solution would be to impose caps on personal attendant hours. The proposed caps have been as follows: Meal preparation 30 hours per month, Outside the home 18 hours per month, Laundry 12 hours per month, Housework 17 hours a month, Finances 3 hours per month. For many people, these limits don’t make sense.

Last week, on Thursday, October 29, 25 Chicago ADAPTers gathered for a direct action on DHS. Our demands were to meet with the DHS Secretary, Michelle Saddler, to eliminate the caps, and to resume quarterly meetings with the State government on the planning and implementation of home service programs in the State of Illinois. At 11 am, led by new member Adam Ballard, we streaked past DHS security guards and hit the elevator buttons to go up to the seventh floor. The guards immediately took action to prevent Chicago ADAPTers who made it into the elevators from going up to the 7th floor. A DHS staffer came down to find out what was going on, and as Chicago ADAPT pulled out our signs and began chanting, Rahnee Patrick and Amber Smock let the staffer know what we wanted. She promised to immediately see if we could get Secretary Saddler. While we waited for her to get the Secretary, our people did an awesome job of chanting “We Want Saddler!” About ten to fifteen police officers arrived on the scene and Mike Ervin went to greet them. The DHS staffer came back with the DRS director’s assistant to report that Secretary Saddler and Assistant Secretary Grace Hou were in our state capitol three hours away as the legislature was meeting, and could not be reached to meet by phone. Chicago ADAPT caucused and asked to meet with Saddler and Hou as soon as possible in person. The DHS/DRS staff then asked that Rahnee and Amber go up to their office while they got details of when the meeting could be held. Our people then made space for people to use the elevators and lobby, but remained on watch. We got an agreement to have 10 Chicago ADAPTers meet about HSP with Saddler and Hou on Thursday, November 5. This information was shared with our people, at which point we declared a victory and backed off, much to the relief of DHS/DRS, security, and the cops.

Today, November 5, our people went to meet with Hou and Saddler. About six or seven extra folks stayed down in the lobby passing out fliers about our meeting to passersby. Our agenda was to stop the HSP cuts, testify that the cuts are being implemented NOW even though DRS says they are not, discuss long range HSP planning and also discuss the fact that pro-Howe Developmental Center supporters have forced the state legislature to have a hearing on whether Howe’s closing has a good process and whether it should be re-opened. Saddler, Howe and DRS director Rob Kilbury were at the meeting. They listened to our concerns and heard first person testimony from Mark Karner, Susan Aarup and Joe Barrett. DHS said that the cuts are basically on hold and that any implemented cuts are being done by offices who haven’t gotten the word about the hold. Affected persons should complain to DRS. DRS said that Jennifer Thomas has done a great job of advocating on HSP and letting them know what is going on with the grassroots. DHS agreed to resume quarterly meetings with ADAPT, the next one to be held in January. DHS is very interested in what can be done to advocate for the CFC Option so Illinois can take advantage of it. DHS also encouraged us to be present at the Howe hearing. In general, it was a very productive meeting and all sides were able to air their views, particularly in regards to who was communicating any info about cuts to HSP. There remains a great deal of stress in the state due to an unbalanced budget and the state’s inability to pay up to all its contracts, but from this point on we have established that we will partner as well as we can so no decisions are made about us, without us.

Great job to Chicago ADAPTers, both veterans and newbies! FREE OUR PEOPLE!"

Ramblings from the Ranch

From the gridiron:

If you've made it this far, I thank you. Those of you who actually read this section should always expect it to be here. Three things in life are certain, and they are death, taxes, and the Cowboys.

Well, in the eyes of the media, the Boys pulled an upset by beating those dreaded Philadelphia fowl, and I know I did not use the proper noun there. I'm not afraid to admit that I was a bit apprehensive going into that game, especially since it was at their place. Yet, I tell you this is a different team from last year. These Cowboys will not lie down and die for any team, especially one hailing from Philadelphia.

With only a couple of exceptions, Tony was brilliant in that game, and let the naysayers skulk into the shadows when they say he and Roy Williams are not in sync. It took Brady and Moss, at least, two or three games to get their rhythm back, and they've been playing together for going on three years now. Besides, if people thought Roy Williams was going to do what T.O. did the last few years, they were way off target in the first place. Roy is a possession guy, and he will move the chains for you. However, he's not going to catch a 60-yard out-and-up. That's why we have Miles Austin.

I won't belabor the fact that we won and that we are now atop the NFC East. However, I will point out a few things. First, as I've always said, if you get into McNabb's face and put pressure on him, he will fold like a cheap suit. He had thrown one interception before coming into that game. Yet, what did he do during the game? He threw two interceptions—one in the first drive of the game. I'm not saying he's a terrible quarterback, or maybe I am. I am saying our defense played incredibly well, and Jay Ratliff might have just punched his ticket to the Pro Bowl. Regardless, the question remains as to whether or not McNabb has ever won the big game. The answer is a resounding, "No." Neither has Tony, but who's been around longer?

At this point, I see the NFC East as a race between two teams—the Cowboys and Philadelphia. Of course, I believe we have the upper hand, at least, in terms of head-to-head matchups at this point. New York and Washington are merely shadows of their former selves, and that is giving Washington far more credit than I should. Obviously, Minnesota and New Orleans are still at the top of the mountain is the NFC, though both teams showing glaring weaknesses in the last few weeks. All I'm saying at this point is being 6-2 is a very good thing and much better than 5-3 or 4-4.

I will not get too cocky here, as I know there is still a half of a season to play. Nevertheless, the Boys have three very winnable games on the schedule. It will not be easy to play in Green Bay in November. It never is, but if we can get through that game with a win, I don't see Washington or Oakland being that much of a challenge. Of course, I will put a caveat on that statement by saying I'm sure Philadelphia didn't think Oakland a challenge either. Never look ahead in football. There's always someone sneaking up behind you, especially if you're the Dallas Cowboys.

Future Leaders--and a Bag Full of Tricks and Treats

2009-10-31T17:50:00.009-05:00

October 31, 2009

Introduction

Taking into consideration advice from friends and readers of the blog's first post, I will do my utmost to make this post shorter. Still, we all remember the saying about the best-laid plans. I will do my best, though. If for some reason you have no idea who I am or why you might be receiving this, read the blog's first post, as it should answer some of your questions.

Though I always endeavor to post each week, there are times life does get in the way. I hope that things will settle into a routine, but as with life itself, there are no guarantees. With that said, here are some of my musings from the previous week. Happy Halloween!

And a Child Shall Lead Them…

Well, at least, that's the hope. Wednesday, October 28, was Illinois Youth with Disabilities Legislative Action and Rally Day. The event was organized through collaboration between Illinois youth and youth workers working under the name Real Educated Active Disabled Youth (READY) with the strong support and cooperation of Access Living's Youth and Education Team. Access Living is the largest Center for Independent Living in Illinois and one of the largest in the country. Amber Smock and Adam Ballard headed its team.

The goal for the day was to bring young people from all across the state to Springfield and let them engage in grassroots advocacy on the political level. The idea was to let them meet their own state representatives and senators and tell these sometimes seemingly larger-than-life people what was on their minds. It is a great concept and something that seems to be happening across the country within the disability community.

Amber and Adam were great as leaders for all the kids or young adults, I should say. I suppose I'm letting my age show there. There was a contingent from Champaign that came and really seemed fired up. Yet, to quote the Bard, therein lies the rub.

Other groups from Alton, Carbondale, and other parts of the state said they were also going to come. Yet, for whatever reason, they could not make it. Many said they couldn't find enough young people who wanted to participate, while others might not have seen the need to take part. That is a true shame, as this was definitely an educational opportunity for both younger and older adults.

Many young adults who came to the event, as well as many more that did not, really are the future of the disability rights movement in Illinois. That might not happen in the next month, year, or decade, but it will happen. Those of us currently holding leadership positions, and I don't include myself in that list, need to realize that every time we do not take advantage of a situation like this, we are losing one more opportunity to ensure the fight for equality, civil rights, and independence continues.

Now, keep your powder dry. Many of these young adults are in no way ready to become leaders and need much more education, guidance, and training in advocacy before they are ready to take up the fight. None of us needs to sit on the backbench right now. If anything is true, we need to be front and center, visible to everyone, and full throated in our calls for equality in the face of discrimination. We need to be examples for our youth and not just caretakers. We need to show them how to advocate and not just tell them.

I do not want anyone coming away from what I write, though, with the idea that the Legislative Action Day was, in any way, a disappointment or failure. In fact, it was just the opposite. I think the young adults and those of us who aren't so young left the Capitol with a clearer picture of the legislative process. I can't say it was a pretty picture, as politics can sometimes be almost painful to watch. Nonetheless, everyone left a bit more educated and realistic about what we need to do. That is something beneficial to all of us, especially when we think we know all there is to know.

Still, I will leave you with this caveat. If we are going to say we advocate, if we are going to call ourselves disability rights activists, if we are going to speak about change and make noise about how people need to listen to us, then those same people need to see us. We cannot hide in our various corners of the state, hoping that someone else does the work for us. We do not have the privilege of saying that we will definitely get involved the next time something like this comes along. If those of us in the disability community do not see fit to get involved when there are those almost begging us to commit our time and energy, please tell me what, then, we are actually doing.

I am sure my bluntness might offend some people who read this. Unfortunately, the time for gentle coaxing and ego stroking has passed. Leaders must lead, and sometimes that means by example. We should never put a quota on advocacy. If one young person in some part of the state wanted to come and be part of this event, that should have been enough impetus to get him or her to Springfield. We do not have the luxury of getting to choose our fights on a case-by-case basis. Nor do we have the time to sit on the sidelines, while others do our work for us.

There are times I fear things are happening right before our eyes, and we do not even notice them because other things, smaller things, take precedence. I know we all have our jobs to do. Yet, no matter our title, at the crux of it all, we are advocates first. If not, why do we go to rallies? Why do we spend hours in committee hearings, just waiting for our bill to be called? Why do we write letters or send emails to convince someone our point of view is legitimate? Why do we call a legislator's office so many times that the legislative aide knows us on a first name basis?

We need to accomplish those smaller things to keep offices and organizations running. There is no shame or any less importance in that, and it was not my intention to imply anything of the sort. However, if that is how we spend all our time, we really do need a wake-up call. Let the young adults, hungry for knowledge and eager to follow our example, serve as the reminder we need. Complacency is not an option. Distance and hardships are not excuses. If civil rights activists in 1965 never crossed the Pettus Bridge in Alabama, where would we be today? In the face of great adversity or apathy, we must fight our own human nature to rest on our laurels. Perseverance is a learned reaction to the worst situation, and it is up to us to keep learning—and teaching.

One Is the Loneliest Number

Apparently, Sarah Palin is not the only public figure going rogue these days. Sen. Joe Lieberman, (I) Connecticut, has vowed to join the Republicans and filibuster any health-care reform bill with a public option that comes before the Senate. It seems odd that Lieberman would do this, considering he has always opposed a filibuster even for bills with which he disagreed, like the Iraq war vote or making sure George W. Bush's judicial appointments got through the Senate. Yet, now, Lieberman decides a filibuster is the only way to stop this dreaded public option from adding too much competition to the health care insurance industry. Obviously, he must be a man of strong moral fiber with a commitment to do what is right for the American people.

Still, something does not quite seem right about all this. I want to try to put the pieces together. A majority of people in his home state, a number somewhere near 68%, supports the public option. Why would Lieberman then be against it? It couldn't be that Connecticut is home to 72 health insurance companies, could it? It has three times the US national average of health insurance jobs as a total state employment percentage. Over the last few years, those insurance companies have given Lieberman millions of dollars in campaign contributions. You don't think those contributions could play a role in his sudden epiphany that a filibuster is the only way to control these scary Democrats from taking valuable customers away from nearly indigent health insurance companies, do you? This is all so confusing.

However, one thing does seem very clear. When Lieberman won reelection in 2008 with the Democrats firmly in control of the Senate, he was given, by their good graces, the gift of Homeland Security Committee chairmanship. That is quite a reward for someone who campaigned against a Democratic candidate for president, even though that same candidate campaigned for Lieberman during his primary struggle in Connecticut. The problem for Little Joey, as I affectionately call him, among other things, is that the committee chairmanship is not a lifetime appointment, meaning the Democratic leadership in the Senate could strip him of that title as they see fit. Therefore, the real question becomes how much Lieberman wants to keep that committee chairmanship as opposed to taking part in a Republican filibuster.

The answer seemed to come from Joe himself. When asked recently by a reporter if he would be willing to lose that committee chairmanship as a ramification of filibustering with Republicans, his response was, "Oh, God no." That appeared to be a strange response, at least, to me. Did Joe not realize that he could lose that nice, comfortable position for behaving badly? Perhaps, he thought his actions would carry no consequences. One way or another, I think Joe didn't know.

Of course, only time will tell what actually happens with or to Lieberman. Other Democrats, such as Sen. Evan Bayh from Indiana, who vaguely threatened a filibuster with the Republicans have since walked back their statements. That leaves Joe all alone. Either he's relishing the moment, or he's beginning to wonder how much weight that branch will hold.

Political Round-up

After a decade long battle, advocates for various minority groups celebrated Wednesday, October 28, when President Obama signed the National Defense Authorization Act for Fiscal Year 2010, which expanded federal hate crimes protection to include gender, sexual orientation, gender identity, and disability. That may sound like a strange juxtaposition—combining hate crimes protection and a $680 billion defense authorization bill. That is the game called politics. During George W. Bush’s two terms, he swore to veto any hate crimes expansion that came across his desk. Yet, because this version of hate crimes protection deliberately was attached to a “must-pass” defense-spending bill, it was almost impossible for it to fail. It was a clever move by the Democratic congress and the Obama administration

More important than political wrangling, however, is the fact that the Lesbian, Gay, Bisexual, and Transgendered (LGBT) community now has a civil right against being the target of hate crimes. They have waited too long, and it should not take brutal beatings that lead to death to bring about such a change. To me, what has not been covered nearly enough by national media within this same law is the new federal protection offered to people with disabilities who face hate crimes. This law is a landmark piece of civil rights legislation for groups not typically considered in the discussion about protecting minority rights. President Obama summed up this sentiment well, when he said at the signing ceremony, "No one in

America

should be forced to look over their shoulder because of who they are, or because they live with a disability."

Illinois finally has a campaign-finance reform bill headed to the governor for signature. At least, it resembles reform. The Senate approved the bill 36-22 Friday, while the House passed the bill Thursday night with no Republican support. Individual contributions are capped at $5,000, while corporations, labor union, or associations can give no more than $10,000. However, other candidate's political committees can contribute as much as $50,000. Political parties' committees, which include legislative leaders' committees, have their contribution capped at a sliding scale from $50,000 to $200,000, depending on which state or local office a candidate is seeking.

These seem like good reforms, especially when one considers none was in place before this bill. Yet, the contribution limits only appear to be in effect for primary elections, apparently leaving in place no cap on campaign contributions during the general election. Moreover, none of these caps curbs what the legislative leaders themselves can contribute to candidates, and they are known for giving in large amounts to the candidates of their choice. Though campaign-finance reformers celebrated this victory—and with some good reason, they realized, at this moment, this bill was the best they were going to get. I am sure they will try again, but, to the unfortunate embarrassment of Democrats, I do not see the leadership willingly capping their own ability to contribute. After all, this is still Illinois.

Finally, an interesting congressional race is shaping up in New York. In the northern part of the state, there is a three-way barn burner taking place in a special election in the 23rd District. This is a strongly Republican district, and yet, on this occasion, a conservative might beat both a Democrat and a Republican. Dede Scozzafava won the Republican primary to replace Republican John McHugh. Bill Owens is the Democrat running for the seat, and Doug Hoffman is running as the Conservative Party nominee.

Those are the facts, but the twists are where it gets interesting. Scozzafava is seen as a moderate Republican, who is pro-abortion rights and pro-gay marriage. Yet, even though she is a Republican, she does not seem to be conservative enough for the most far right-wing conservatives, some of whom not even identifying themselves as Republicans. U.S. House minority leader John Boehner and House Republican whip Eric Cantor, seen as powerful players in Washington, endorsed Scozzafava, but that seemed like it wasn’t enough. Then, again, perhaps, it was the “Godfather kiss,” as her poll numbers are now plummeting.

Hoffman garnered many endorsements from a variety of very conservative politicians, though most of them are no longer actually holding any office or never did. Sarah Palin, Fred Thompson, Rush Limbaugh, and Glenn Beck were among those singing Hoffman's praises. Tim Pawlenty, the governor of Minnesota, also endorsed Hoffman, and he was once seen as a moderate Republican himself. This scenario makes a good argument for the "strange bedfellows" axiom.

Nonetheless, these curious endorsements have lifted Hoffman in the polls to the point where it is now a statistical dead heat between him and Owens, the Democrat. This is interesting on many levels, for if the Democrat wins, many would view it as a crushing defeat for hard-core conservatives. However, if Hoffman wins, conservatives would claim an ideological victory and send a very inexperienced ingénue to the U.S. Congress. In fact, Hoffman has been criticized from both sides as having little knowledge of New York's 23rd District and the problems or concerns of its constituents. Would he be a viable congressman for that district? Well, before I add my two cents to all the different pundits' predictions, perhaps, we should see who wins first.

Tuesday will be an interesting day. If you are a political junkie like me, you have several races to watch, including the New York 23rd as well as governors' races in New Jersey and Virginia. Unfortunately, as is usually the case with politics, the normal amount of corruption and mudslinging abound. Still, for some of us, these races seem as if we are getting early Christmas presents. The anticipation is almost too much to take, he said with tongue firmly implanted in cheek.

Ramblings from the Ranch

From the gridiron:

For those of you who don't know, the Cowboys beat Atlanta last week by a score of 37-21. As you can imagine, I was quite pleased, though there were some areas, as always, that needed improvement. Still, a win is a win, and you don't get style points in the NFL.

Miles Austin, a new player for the team to everyone but Cowboys fans, put up 171 yards and two touchdowns receiving. He's good and only getting better, which might scare some people on teams we play in the future. Of course, I will be the first to admit that he has yet to face a true shutdown corner. That will be the real test but probably not this week against Seattle. Even though they get cornerback Marcus Trufant back, their defensive line and linebackers still seem very vulnerable, which, of course, means the need for safety and possibly even corner help for the run. I predict a win, but I hasten the Cowboys not to look past Seattle to Philadelphia, even though that will be a grudge match I cannot even put into words.

Washington is falling apart at the seams, if that weren't already obvious from the way in which the owner, Daniel Snyder, managed the team during the off-season. That said, if the offense had any semblance of talent, they could have beaten Philadelphia with ease last Monday. Take away two big offensive plays and turnovers that led to points for Philly and Washington wins that game. Obviously, though, you cannot take away those plays and turnovers, but Philadelphia did not impress me in the game.

New York and Eli Manning once again showed their true colors. Arizona is never supposed to win on the East Coast, but they sure did it last Sunday night. For all the Manning worshipers out there, I hate to tell you that your idol fell back to earth, but I will. Against a good but not great Arizona defense, he threw three interceptions, the last one essentially sealing the game for Arizona. I'm not one to rub salt in wounds, but against two good teams, New York has looked flat, sluggish, and, at best, mediocre. What's worse than that? Their schedule just gets harder from this point forward.

There's a lot more to discuss about football in general, but this time, I just reserved my remarks for the NFC East. The second half of the season is quickly approaching us, and it should be fun to watch. I realize for many of you, this is your least favorite part of the blog, but what can I say? I love to write about football and especially the Cowboys. Therefore, please indulge me, as it will continue, at least, through February.

(I guess I didn't make this blog post any shorter than the last one. Believe me when I say I did try. I had much more to say, but I edited myself, though I am sure it's hard to comprehend that. Again, I do promise to try to do better next time. Thanks for reading this.)

The First Post: It's Long But Worth the Read (Hopefully)

2009-10-20T04:30:00.010-05:00

October 20, 2009

Introduction

Hello to all of you. If you don’t know me already, my name is Tyler McHaley, and this is the first of what I hope will be many posts on my new blog, “I’m not saying, I’m just saying.” Do not let the name fool you. It may sound tongue-in-cheek, and, to some degree, it is. Yet, I hope to cover quite a few serious topics on this blog. Though I initially created it about three months ago, it took a tragedy to inspire and motivate me to start writing. I’ll go into more detail on that later in this post.

Many of you are receiving news of this post because I have your email address and thought you might be interested. Others received it because someone else forwarded it to you. Regardless of the reason, I hope you enjoy it and, even if you don’t, offer any feedback you think may be constructive.

By now, I’m sure some of you are wondering who I am or, at least, wanting to know why I’m doing this. First, I’m a 40-year-old man with a disability, cerebral palsy to be precise, and I use a power wheelchair. In December, I will receive my master’s degree in political studies from the University of Illinois at Springfield. I have another master’s in community health, which I earned in 1994 from the University of Illinois at Urbana-Champaign.

Please don’t read about my educational background and think I’m trying to wave pieces of lambskin at you because I’ve actually accomplished so much. I wish that were true. However, those of you who know me well can attest to my being a perpetual student. It definitely may seem that way, but I want to dispel those nasty rumors now.

It’s very true I’ve been going to school for far too long. That ends in December. I worked on both master’s degrees because I couldn’t find meaningful, long-term employment, which is another subject I guarantee I’ll address very soon. However, my family always reinforced in me the need for a good education, and they were right. Still, the time comes when learning must become doing.

For years, I have told people around me, or, at least, those who would listen, what was on my mind. Those five or six persons got quite the earfuls of my opinion. Then, I realized if I think my opinions have merit—and why else would anyone start a blog?—I should have the guts to see what the blogosphere thinks. That’s why I’m putting myself out here. I want to challenge others and myself as well. It was time to get out of my head and into the world.

I am a self-affirmed political junkie, which gives insight on why I’m studying political science, though that term does read like an oxymoron, such as military intelligence or Fox News. Oh, that’s right; I’m also a self-avowed liberal and quite proud of it. I tried conservatism years ago, but it felt like a shoe that was just too tight in many, many ways. Thus, as I write about politics, it will come from a decidedly left-leaning slant. Nonetheless, I always like to hear other opinions and have lively but courteous debate. Though I am a liberal Democrat, I never try to disparage another person’s beliefs. I only try to point out the other side of the issue. Passion is essential for debates like that, but name-calling and flaming are not and won’t be tolerated on this blog.

At heart and really at the core of my being, I am an advocate for people with disabilities as well as a myriad of other social, economic, environmental, and foreign policy causes. Some call me a “bleeding heart.” Yet, I ask if our hearts don’t bleed, can we really call ourselves human? That’s a question for another time.

Finally, I am a diehard Dallas Cowboys fan. If my heart does indeed bleed, the blood runs silver and blue. You might read an occasional reference here to my Boys, either in praise or in critique. I have no doubt thoughts like those will creep into this blog at times. It’s a hazard of being a fan or, as some of you already label me, a fanatic. I answer to both.

Well, that’s quite enough about me. If you’ve reached this point, I say, “Bravo.” You may as well read the rest, since you endured this painstakingly long and overblown preface. I promise most all introductions to follow will be far shorter. Now, I’ll explain, as I previously mentioned, the impetus behind what finally led me to start writing on this blog.

Remembering a Legend: Lester Pritchard

If you didn’t know Lester Pritchard, you were missing a large part of life. If anyone indeed knew about life, how to live it to the fullest, and still be effective at everything he did, it was Lester. He had a passion for life few could match. His laugh was infectious, and his mind radiated brilliance.

His wife, Barb, meant the world to him, and many people who knew them felt like members of their very extended family. That family spanned Illinois and reached across the country as well. That’s how the Pritchard’s have always been. Once you know them, you know them for life, and you feel as if you’ve known them forever.

Yet, if Lester would want us to know and remember him for anything, it would be for his staunch and fearless advocacy for people with disabilities. Society might have labeled Lester as a person with a significant disability, as he had cerebral palsy that some would call severe. He used a power wheelchair, and his speech was affected to the degree that, at times, someone else would translate his thoughts. Yet, do not make the mistake that his inability to do one thing ever took away from his ability to do so much more.

Passion and perseverance are two words that don't come close enough to describing what Lester was to the disability rights community. He had an insight about him that allowed him to see all sides of an issue and see them more clearly than anyone else could. More than that, though, he had wisdom that you could feel when you were around him. That wisdom gave him an edge over those who supported him and opposed his ideas, which I saw him use repeatedly to his advantage.

However, Lester was more than just a brilliant mind, one that seemed to have a never-ending source of new and fresh ideas. He was an inspiration, a true catalyst for change. When I use the word inspiration, please don't fall into the trap that many do, thinking that someone with a significant disability, simply by getting out of bed in the morning, is some sort of inspiration to all of us. People with disabilities don't inspire others just because we breathe. Contrary to popular belief, most, if not all of us, actually need to do something and prove ourselves before we receive any admiration from anyone, particularly our peers. Yes, Lester did that; he offered ideas, motivation, and opportunities for real change, which are sometimes sorely lacking from too many of us.

Lester always had a glint in his eye you could not mistake for anything but hope. That hope made all of us believe that we could conquer any monster before us and overcome any obstacle set in our way. Again, it is important to understand what I'm trying to say here. At rallies, protests, or committee hearings, it was not seeing Lester that made us believe we could change other people's minds or move closer to complete independence. Instead, his ideas and persistence spurred us forward. We believed because many of us saw in Lester the leadership and charisma any movement needs to succeed.

When Lester passed, he left a deep void within the disability rights community, one, frankly, I do not think we will ever fill completely. We will miss his intelligence, insight, passion, laughter, and so much more. I have written this sentiment before, but it still holds true. No one can carry Lester's torch. It cannot be passed to anyone. All we can hope is that we can use his torch to light hundreds or thousands of other torches and create a new generation of disability rights leaders. Lester is gone, but his spirit and cry for independence and equality can never be silenced. I, for one, will not allow it.

A Call to Action

Lester Pritchard was a legend among disability rights advocates throughout the nation. I have no doubt in the weeks, months, and years to come that his legend will continue to grow. More people will suddenly remember stories about what they did with Lester, how they worked with him on this issue, or how they made a difference because of what they did with Lester. Many of these stories will be true. Some will not. What concerns me is not their truthfulness but that they are stories.

Lester was not a man of stories. He was a man of action and advocacy. He was principled but never satisfied. He was stern but never hurtful. He knew when to speak and when to listen, and most importantly, he knew what was right.

We need more Lesters and fewer storytellers in the disability rights community. I have told my share of stories over the years, and I have rested on my laurels. I know, however, that I cannot keep doing that and continue looking at myself in the mirror each day. I must become proactive. I cannot find myself in the position of reacting constantly to something that happened to me, if I had the slightest chance to change the outcome. I have to use this blog as an opportunity to put these words into actions. If I don't do that and continue to bloviate over things I wish were different, what makes me any different from the people I continue to admonish? The answer is nothing.

If there is one true gift Lester left us, it is this small window of opportunity. The disability community in Illinois now has a relatively short time to come together as one cohesive, all-encompassing unit, sharing the same message and vision to bring about change in the form of independence and equality for all people with disabilities in Illinois. We no longer have the time to let our differences divide us and keep us from speaking with one voice. We all want the same thing, an integrated society, freedom from discrimination, equality in the workplace, and changes in society's attitudes about disabilities in general. If we all want the same things, it would only seem logical that we all work together to achieve the same ends.

In the past, this has not been easy for us to do. The problem I see before us is that we don't have enough time now to squabble over territory or who should lead and who should support. We had a tragedy befall our community. Now is the time for us to look back for just a moment at what Lester achieved and celebrate those achievements. Yet, after one brief glance over our shoulders, we must do what Lester would have done and move forward, firm in our convictions to free people with disabilities from institutions and steadfast in our desire to make this state and this country places where all people are treated equally.

I know it is much easier for me to write these words than to put them into action. This will not be easy, and no one ever said it would be. Yet, we stand on the shoulders of giants like Rosa Parks, Martin Luther King, Jr., Justin Dart, and now Lester Pritchard, all of them lifting us above the fog to see what lies ahead. However, if we ever need reminding of what we're doing and what drives us in the first place, I would say that we just steal a popular phrase and adjust it to speak directly to the disability community in Illinois. If we ever forget, we should ask ourselves simply, "What would Lester do?"

Political Round-up

This portion of the blog will touch on different areas in politics—on both a state and national level—that interest and/or infuriate me. However, I will not usually spend an inordinate time dwelling on them. Below are a few things that come to mind this time around the horn.

Moderate Democrats in both the U.S. House and U.S. Senate need to grow a spine. Attempting bipartisanship at every turn is not working, and it will continue not working. Conservative or so-called "blue dog" Democrats in the House are far more concerned with reelection than passing substantive legislation. The same is true for those in the U.S. Senate, but they are also driven by a political ideology different from both progressive and moderate Democrats. In short, you cannot always play along to get along. In the end, the bigger kids take the toys and leave you sitting in the sandbox.
Healthcare reform actually needs to reform the health care system. Otherwise, it will be a 1000 page bill that says a lot, gives members of Congress much pork, and means absolutely nothing. Reform without a public option and without regulation of the insurance companies by breaking up their cartel is simply a paper tiger.
A new Washington Post-ABC News poll shows a clear majority, 57%, supports a public option and mandated health insurance for those who don't have it. The number is especially high among seniors and independents and grows with even higher when states control the process theand the program is limited to those without access to affordable insurance. The link is here: http://www.washingtonpost.com/wp-dyn/content/article/2009/10/19/AR2009101902451.html?referrer=email.
President Obama needs to choose a side. Campaigning as a liberal and governing as a moderate or even conservative will not work with the party base. Further, as opposed to the past when Democrats ignored the liberal base and left it as a given, the politics on the left are shifting. Liberals or progressives, if you wish, will not stand idly as campaign promises go unfulfilled. Though there will not be a mass exodus, even a small loss of support could be critical in these divided times.
I am going to point out Republican hypocrisy whenever I see, and I see it quite a bit. Tea parties, town halls with bussed-in protesters, and chants of communism mixed with pictures of Hitler and fascism (communism and fascism being on opposite ends of the political spectrum) are so utterly ridiculous that they should be embarrassing. There was a time when conservatives and Republicans had a valued place within the political discourse of this country, but unfortunately for all of us, that time has passed. Olympia Snowe is not president. She comes from a state that, in my opinion, has more in common with Nova Scotia and Washington DC. Why the Democrats courted her one vote in the Senate Finance Committee when the health care bill, albeit a bad one, already had enough votes to pass is beyond my comprehension. According to the same Washington Post-ABC poll, only 20% of Americans willingly identifies themselves as Republicans. Right now, they are not part of the political discourse. In fact, they're not even part of the water cooler gossip. It's time for them to admit the defeat they suffered last fall, take a long retreat to find themselves, and do their best to muzzle Rush Limbaugh and Glenn Beck before they all get sent to secret FEMA internment camps.
Why is the congressional representative, Aaron Schock, from the Illinois 18th district inviting noted neoconservative and Fox newscaster, Fred Barnes, to a fund-raising dinner? I won't go into neoconservatives at this point, but after a year and a half of research, I can say definitively that it only took them eight years to drive this country into the ground. Barnes is the executive editor of the neoconservative bible The Weekly Standard, a scary publication indeed, and most recently, a George W. Bush biographer. If Schock is using his time in Washington to cavort with the likes of these people, I fear how his policy decisions are being shaped or, to use a better term, molded to fit the neoconservative agenda. I'm not accusing Schock of being a neoconservative, but if the company he keeps is any indication of his political philosophy, there is definitely cause for concern.
Illinois needs to raise its income tax. That is not a popular sentiment, but it is the correct one. Too many services for people with disabilities, among many other "vulnerable" populations, have been cut or put on the chopping block to receive cuts. However, that is not the reason the state needs income tax increase or, at least, not the sole reason. We do not generate enough revenue to balance our budget each year, and the Illinois Constitution calls for a balanced budget each year. This is not rocket science. The General Assembly can choose to use fuzzy math or push the problems to the governor, but voters in this state cannot allow them to push paper for six months out of the year and not do their jobs. I fear that fairly soon, the only major difference between California and Illinois will be the coastline.
The Illinois Department of Human Services must reinstate funding for the Home Services Program within the Division of Rehabilitation Services. People with disabilities need personal assistants, and centers for independent living around the state need to have the funding required to train and refer the assistants. As it stands now, these cuts are already in place or soon will be. More pressure needs to be placed on the governor and the General Assembly during the veto session to put the funding cuts back in place and stop trying to balance the budget, which they have failed to do, on the backs of the disability community.
Finally, Springfield needs high-speed rail. I admit I haven't studied this issue as much as I need to do, but it seems that it would be common sense and good business to have a quick and accessible route from Chicago to Springfield. Where to put it and who loses what are not questions I can answer now. Still, the more we bicker about this, the less likely it is that we will receive federal funding. Perhaps, some of our priorities are out of place.

Ramblings from the Ranch

From the gridiron:

New York, Philadelphia, and Washington all lost over the weekend. The Cowboys gained ground and didn't even have to play. I wish it were as easy as that every week. However, sloppy football, lazy football—including on the part of the Cowboys—is becoming the norm in the NFL. Too many teams rely on the big play instead of heeding Hank Stram's appeals to matriculate the ball down the field. Yet, when those big plays don't happen, a large number of teams forgets how to play football, starts pressing, or just has the wheels fall off completely.

Look at Chicago Sunday night when the team could have easily put away Atlanta several times. Instead, there was sloppy football, turnovers, penalties, and complete mental lapses. On Monday night, though, Denver wasn't lazy and played with discipline. They were crisp and focused. They also won.

As I see it, people can prognosticate all they want before and at the beginning of the season. Still, it comes down to playing the games and executing. A good example is Tennessee, which does neither.

The Cowboys play Atlanta next Sunday in Dallas, and I expect it to be a close game. However, if the Cowboys execute, stop shooting themselves in the feet, and play relatively mistake free football in terms of penalties, they should win. I truly hope so, but it's hard to predict anything in this league these days. If you disagree, just remember three weeks ago that Mark Sanchez was the next coming of Joe Namath. How's that working out for the J-E-T-S?