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.
Friday, February 26, 2010
Sunday, February 21, 2010
Managed Care, Managed Lives
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.
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.
Subscribe to:
Posts (Atom)