I based much of my testimony on draft legislation attached to e-mail from Tony Paulauski with The Arc of Illinois. Though the final version of the legislation likely will look somewhat different from what I read, I believe it is a good blueprint for what will receive a vote in each of the special committees. It appears, though nothing is certain, the Senate will begin the process of moving a Medicaid reform bill out of that community first and then onto the Senate floor. Of course, this is only speculation now, and we will all know much more in the next two days. In the interim, I thought I would post my testimony so someone could read it. Even though I am quite sure all the members of the committee already have digested it thoroughly, I thought it would not hurt to give them another medium by which they could access the testimony. No one needs to fear, however, as there will be no pop quiz following.)
House Special Committee on Medicaid Reform Testimony
As a disability rights advocate, I have been following closely both the House and Senate Special Committees on Medicaid Reform. It is a daunting task and one that cannot be taken lightly. Further, I have had the opportunity to read the draft language for the Combined HFS Medicaid Reform Bill. Though it is not light reading, it is important for everyone involved in Medicaid reform to understand how both committees intend to move forward on legislation regarding this issue. Without equivocation, I can tell you that these recommendations will face resistance from state agencies and bureaucracies, providers, insurance companies, and, indeed, advocates from all across the spectrum of Medicaid reform. That resistance is not to say that all these recommendations are wrong or ill planned. However, it is to say that by encompassing so many ideas into one piece of legislation, members of these committees and the General Assembly will face the need to revisit some of these recommendations and react accordingly. As the federal government implements sweeping health-care reform, the Medicaid system in Illinois becomes a much more fluid entity that requires proper management on all levels for success as measured by satisfaction and good health outcomes for its recipients.
The proposed legislation seemed to cover four main themes. They included long-term care rebalancing, fraud prevention and eligibility verification, improving information technology throughout Illinois' different state agencies, and managed care. I do not pretend to be an expert in any of these areas, let alone all of them. However, I fully believe it is important to discuss, at least in a cursory manner, the intent behind the committees' recommended changes to the Medicaid system. It is in the public's best interest to provide the most transparency available in legislation of this scope and importance. We would fall short as advocates if this were not one of our primary objectives in lending our voice to Medicaid reform.
No one wants to see fraud in any state agency or system. The unfortunate fact is that fraud always exists on every level of government and private business. That does not mean it cannot be limited and the individuals responsible for it made to account for their actions. Yet, in our rush to reform a system that primarily affects the poorest and most potentially vulnerable in our society, we must not overlook how these efforts will change people's lives drastically. Expanding fraud prevention and improving or tightening eligibility verification not only will save the state a somewhat significant pot of money and satisfy many who believe these are the most important reforms, it will also create a possible atmosphere of fear among many Medicaid recipients who have never allowed fraud to cross their minds. It is imperative for this committee and the General Assembly in totality to ensure that the agencies responsible for implementing these new proposals tread lightly among individuals who may not understand why these changes include them, when they are not part of the problem. The responsibility lies with the Departments of Health Care and Family Services and Human Services to explain why there are different eligibility standards and if those standards affect individuals and families in the present and in the future. This is the only fair thing to do, and in doing so, it would ease tension and make it much easier to transition into these reforms.
Improving information technology is needed on many levels in state government and not just in reforming Medicaid. It is long overdue, and many of the recommendations made by these committees cannot take place until the system currently running these programs improves exponentially. The state of Illinois can no longer afford to live in the technological dark ages and expect forward thinking ideas to fall into place. If agencies cannot "speak" with one another via appropriate and fast acting computer networks, all these meeting and discussions have been an exercise in futility. Yet, every committee member needs to understand that this kind of move into 21st-century technology comes with a cost. If you update technology to improve agency efficiency and, ultimately, reform Medicaid, you must not do it "on the cheap." These services are too vital to too many people, and they affect the lives of people in every political district in the state. Proposing these ideas and not fully funding them is worse than no reform at all. It is in Illinois' best interest to provide the initial outlay of funds that will ensure a seamless transition from an antiquated system to one that is already in use in many states across the nation. Moreover, a transition of this type is very much in the best interest of those receiving services
Long-term care rebalancing—removing barriers to community living for people with disabilities of all ages—is a unique phrase and one that has the potential to serve Illinois well. Yet, before we take great strides into the future, we need to remember the past in its stark reality. When considering spending for small community living opportunities for people with disabilities, Illinois still ranks 51st in the nation and 47th nationwide in funding community services. However, Illinois remains fifth in the country on spending for state operated developmental centers (SODCs). This dichotomy cannot last, particularly if the state truly wants to eliminate its deficit and follow the national mass trend toward community-based services.
Though it is gratifying to read proposed legislation that promotes a pathway for Illinois to move away from its institutional bias, these are currently simple proposals that require political will to implement. I hope when faced with resistance from unions, unfortunately misinformed family members, and other special-interest groups, these recommendations live to see the light of day. It is no longer a matter of what advocates consider fair and just. Living independently within the community is a right guaranteed by the US Supreme Court in the Olmstead decision and a reality facing Illinois based on recent court decisions that force the state to move away from institutionalization.
Yet, again, as with updating technological standards, Illinois must face the reality that funding community services is necessary to create an environment conducive to long-term care rebalancing. The current infrastructure for community services is lacking at best. Illinois ranks near the bottom of the country in terms of affordable and accessible housing. There is an overwhelming need to build more residences that can act as group homes, CILAs, and, most preferentially, independent residences for people who leave institutions and nursing homes. If the initial investment is made by the state, it will create new jobs immediately and in the future, as workers from institutions and nursing homes transition into the workforce of community services. The jobs created by reinforcing community-based infrastructure would bolster a sagging economy and increase the tax base in the state. Contrary to union complaints, their members can continue doing the same kind of work in a much more residential setting, as opposed to an institution, without the risk of falling into poverty. However, the most important signal shown by this type of action is Illinois' actual commitment to deinstitutionalization.
Finally, it seems that true Medicaid reform, as put forth by both communities, hinges in large part on managed care. Though this style of health care delivery system and its impact on people with disabilities has been discussed in Illinois for more than a year, the plan for its implementation seems already in place. It is a bold premise to have fifty percent of Illinois Medicaid recipients on some form of managed care by January 1, 2015, as discussed in the Combined HFS Medicaid Reform Bill. That time line coincides quite conveniently with the end date of a managed care pilot program, which begins this month in several northern Illinois counties. It seems difficult to understand how the state and HFS can adequately have time to review how a pilot program like this succeeded or failed when there is already a law stating that more than 1 million Medicaid recipients are to receive managed care, regardless of the pilot program's outcomes.
Legislation of this magnitude requires careful consideration at each step. If people with disabilities are going to take part in a pilot program, which purports to measure the effectiveness of managed care for acute health and possibly long-term care, it only makes sense that the program needs to receive adequate evaluation before it goes statewide. Managed care has yet to show its effectiveness in providing long-term care needs for people with disabilities. Why should members of the disability community in Illinois bear the brunt of experimentation before adequate analysis determines whether this system actually provides the care intended and absolutely needed for individuals with disabilities? Even if managed care is successful in the pilot program, showing the state both tremendous health outcomes and significant monetary savings, there remains a need to guarantee this type of program will work throughout Illinois before legislation mandates that it moves in that direction.
There is a need for oversight with managed care and, indeed, with Medicaid reform in general. People most affected by the changes, particularly those in the disability community, need to have a voice and a strong presence at the table, as their futures are discussed in the same context as creating a better fiscal environment for state government. The General Assembly should appoint an independent review board to discover if these reforms, especially those pertaining to long-term care rebalancing and managed care, are making a lasting and satisfactory difference in the lives of those affected most by these changes. If everyone agrees there is success across the board for these reforms, then moving forward with them into the future is a reasonable and beneficial course for both Medicaid recipients and the state of Illinois. However, if success is still elusive, there should be no doubt or hesitation to revisit these reforms and make the necessary changes that will benefit everyone.
Nothing is set in stone, even as the federal government creates an implementation plan for the Affordable Care Act. All the disability community wants are progressive ideas put forth with deliberate and transparent motives. We want an opportunity to take part in every aspect of this discussion, and we want a guarantee that the state will listen to our voices and not just hear them. As advocates, we will not stop pressing this issue until we feel those in positions of power understand that we organize, speak forcefully, and vote. As a political movement, we exist not in the shadows but in the spotlight. It is time for everyone who would make decisions for us to recognize that truth and the power it wields.
Tyler D. McHaley, M.S., M.A.
President Springfield Area Disability Activists
334 Norwalk Rd.
Springfield, IL 62704
Cell: (217) 899-5015
E-mail: Tyler.Mchaley@gmail.com
www.disabilityactivists.org
