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/
Saturday, March 27, 2010
Thursday, March 18, 2010
The Fierce Urgency of Now
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.
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.
Friday, March 5, 2010
Kill Bill, Vol. III
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.
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.
Thursday, March 4, 2010
Word Salad with Attitude Dressing on the Side
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.
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.
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