Question and Answer. Period.

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/.

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