Like many other human services providers, the Illinois Network of Centers for Independent Living
(INCIL) is being hit hard by the Illinois budget crisis. Access Living is one of the 22 Centers for Independent Living (CILs) in Illinois. The CILs serve 95 of the 102 counties in Illinois. INCIL’s Executive Director, Ann Ford, shared the following, based on reports from 19 of the 22 CILs, which employ between 450-500 people:
•39 CIL staff have been laid off state wide since July 1, 2015
•93 CIL staff are working reduced hours because of furlough days, experiencing pay cuts ranging from 20% to 40%
•21 vacant CIL positions remain unfilled throughout the state (delaying hires is one way to save money)
•Two CILs are in the process of closing satellite offices
•All CILs are restricting travel, including in some areas travel to consumers’ homes
•At least four CILs are developing contingency plans to close in the event funding doesn’t come within the next six months
•It is difficult to determine how many consumers have gone without services. A reasonable estimate would be 800 to 1,000 people statewide
•The impact includes the enormous emotional toll this issue is taking on staff at all CILs, as they take on increased workloads while losing a portion of their income.
The CILs are doing the very best they can to continue to provide services to empower people with disabilities to live as independently as possible in the community. Quite often they are a real lifeline for many people with disabilities. During this difficult state budget crisis, know that your local CILs have been doing everything they can to show why their programs matter to the local community. The CILs are still waiting for just over $4 million in FY 16 budget money for CILs from the state of Illinois, as well as other funds specific to certain disability programs they run.
While Access Living has been holding on, we are very concerned about our fellow CILs at risk of closing. Please contact Ann Ford at annford@incil.org if you have questions about the network; you can also check www.incil.org to see what CILs serve your area. We also urge you to contact your Governor, state senators and representatives to urge them to work on a budget solution ASAP so that disability services are not further impacted.
Ann Ford
Executive Director
Illinois Network of Centers for Independent Living
This was originally shared as an Advocacy Alert from Access Living.
Blacks Hit Especially Hard in Illinois Budget Impasse
February is Black History Month – and Illinois’ eighth month without a State budget. As we highlight black people’s contributions to the American narrative, the message sent by Illinois’ budget impasse is hardly celebratory.
All Illinoisans are suffering as the fragile web of supportive services slowly unravels. Communities across the state are feeling the ripple effects of layoffs, reduced services, slow State payments and the tension that comes with sustained uncertainty.
In the midst of our shared suffering, we must acknowledge this sad truth. People of color, especially black people, are enduring the deepest battle scars from this budget stalemate. And if history is our teacher, these will become the scars of future generations. America’s tortured racial history is embedded in the laws and policies that govern all of us, resulting in widening social, health and economic gaps that operating without a state budget only exacerbates.
Earlier this month, Heartland Alliance’s Social IMPACT Research Center issued a report that illustrates how pervasive these disparities are in Illinois. The study reports that despite significant dips over the past several decades, the number of Illinoisans living in poverty today, 14.4%, is almost the same as it was in the late 1960s (14.7%). While under 10% of whites in Illinois are living in poverty and Hispanic and Asian populations each have poverty rates of close to 20%, a whopping 30.6% of black people are living in poverty statewide, while making up less than 15% of Illinois’ population. And what is even more disheartening is that 43.2% of black children under the age of 17 are poor. In fact, poverty among black people outpaces that of whites, Latinos, and Asians in all age categories.
The report lays out a number of health and economic disparities by race. But what is at least as important as the data is the case the authors lay out for the “legacy of inequality” that colors public policy in America. The report offers a historical soundbite of the legalized racist policies of the past that benefited whites and created barriers for people of color, policies and practices that ignore the generational impact of those benefits and barriers, and the practice of mid-twentieth century redlining that seems to have intertwined race, ZIP code and opportunity into perpetuity.
This budget impasse threatens any progress made towards reducing inequalities in Illinois. For example, last year, for the first time in decades, Chicago saw fewer than 1,000 new HIV cases. That does not happen without a network of community organizations and institutions focused on communities hardest hit by the epidemic — black bisexual and gay men, transgender women of color, and black heterosexual women living in communities with high HIV rates. Blacks make up only 15% of the State’s population but account for 50% of new HIV cases. Yet, the governor’s proposed budget includes a devastating 66% cut to the African-American HIV/AIDS Response Act, a dedicated line of HIV funding that supports the black community, the community hardest-hit by HIV. This at a time when an estimated 6,525 Illinoisans do not know their HIV status and nearly 50% of people living with HIV in this State are not receiving any medical care or HIV medications.
One thing is abundantly clear this Black History Month in “the land of Lincoln:” Elections have consequences. We must continue to put pressure on the Governor and our state Legislature to approve a humane budget with a revenue increase even as we prepare ourselves for the next budget battle. As the late poet Maya Angelou often said, “When you know better, you do better.” We can do a lot better, Illinois.
This article was originally posted on RebootIllinois.com.
Kim Hunt
Executive Director, Pride Action Tank
AIDS Foundation of Chicago
What Really Happens After Enrolling in Medicaid Managed Care?
Health & Disability Advocates (HDA) is monitoring the rollout of the Medicare-Medicaid Alignment Initiative (MMAI) and has heard from frustrated case managers working with consumers who are confused about the enrollment process and their rights. In response, HDA developed an enrollment timeline that explains what new enrollees can expect from Managed Care Organizations (MCOs) and plan representatives upon enrollment. To produce the timeline, HDA researched the MMAI demonstration contract developed by the State of Illinois and approved by the Center for Medicare and Medicaid Services (CMS) HDA also solicited input from health plans on whether their on-the-ground practices were accurately reflected in the timeline.
The finished product outlines important points for case managers and their clients to consider.
One Day Changes Everything
Consumers who are enrolled in a managed care plan after the 12th day of the month will not see their coverage start until the month after next. This is relevant for consumers choosing a specific managed care plan in order to see a particular provider or specialist in that plan’s network. Submitting paperwork after the cut-off date means consumers would have to wait longer than expected for necessary treatment. Helping consumers submit required documents in a timely manner can guarantee they are connected to the medical treatment they need, which promotes continuity of care.
Stratification Sets Up Future Contact Standards
Once enrolled in a plan, all enrollees can expect to complete a Health Risk Screening within 60 days. The screen collects information on the enrollee’s physical and mental health conditions and identifies their current medical providers. This is what IlliniCare’s Health Screen looks like. Health plans use the screen to establish intensity of services and frequency of contact with Care Coordinators by stratifying the enrollee as low, moderate or high risk.
Enrollees stratified as low risk will receive annual follow-ups from their Care Coordinators while those stratified as moderate or high risk will have quarterly follow-ups. Moderate and high risk enrollees will also complete a Health Risk Assessment and create an Individualized Care Plan within 90 days. These enrollees will help form their own Interdisciplinary Care Team of healthcare providers that meets quarterly to review the Individualized Care Plan.
The Care Coordinators’ Role
Care Coordinators focus on enrollees’ healthcare needs by connecting them to necessary tests, doctors and treatment. They also facilitate information sharing among providers by leading the Interdisciplinary Care Team. Addressing enrollees’ medical needs is their priority. Care Coordinators direct less attention to linking enrollees to social supports, like housing and public benefits.
It’s also important for case managers to know that Care Coordinators must manage a substantial caseload of up to 600 enrollees. Caseloads include a blend of low, moderate and high risk enrollees, with each risk level weighted differently.
Understanding what a care coordinator can—and cannot—be expected to do is advantageous to case managers. When roles are clearly recognized, case managers know how care coordinators can be used as a resource. And in what instances an alternative referral would be more appropriate. This establishes a stronger professional relationship between case managers and care coordinators, which ultimately benefits the enrollee.
Case managers and Care Coordinators are on the front lines of healthcare reform and fostering solid working relationships between these two players will be a critical component of the success or failure of these efforts. Knowing what case managers and their clients can expect from managed care plans can lay the foundation for a strong relationship that supports the health of individuals while also furthering the goals of healthcare reform.
Bryce Marable MSW
Health Policy Analyst
Health & Disability Advocates
ACA, Medicaid and Unintended Consequences for People with Disabilities
People with disabilities who are eligible for healthcare through Medicaid may experience painful gaps in coverage during transitions. There are groups of people with disabilities that are particularly vulnerable: those who need long-term care services, those who apply but are not yet found eligible for SSI in 209b states with expanded Medicaid and youth transitioning to the adult system.
Long-term care services and supports, such as personal assistance services or durable medical equipment, are critically important to some people with disabilities. Medicaid packages for people with blindness and disabilities, or AABD or SSI Related Medicaid, offer comprehensive coverage, including long-term care supports and services. For those who need them, these services are a lifeline to independence, living in the community and employment. Either not affordable or available through the private insurance market, Medicaid has been the sole access point for people with disabilities who need long-term care services. The Adult ACA Medicaid group, or expansion group, is a Medicaid program that may or may not provide an individual with long-term care services in any given state.
209(b) Expansion States Facing Challenges with Transitions
One key difference across states is the option to automatically provide SSI Related Medicaid to recipients of the federally-administered state supplementary payments though the Supplemental Security Income (SSI) program. Ten states use at least one eligibility criterion that is more restrictive than the SSI program for Medicaid eligibility and are referred to as 209(b) states. This means that an individual in these states who applies and is found eligible for SSI must make a separate application for Medicaid coverage.
The following states are currently 209(b) states: Connecticut, Hawaii, Illinois, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma and Virginia. All but Missouri, Oklahoma and Virginia have expanded Medicaid eligibility through the ACA.
Limited Access to Long-Term Care and Providers in the ACA Adult Group
Because many SSI applications take longer to process than Medicaid applications, people with disabilities can frequently be found eligible for ACA Adult Medicaid while waiting for SSI eligibility to be approved. While this group of individuals who have been approved as ACA Adult Medicaid eligible has access to healthcare, they may not have access to long-term care services.
Once SSI eligibility is approved, however, the beneficiary is no longer eligible for the category of Medicaid (ACA Adult) they are currently receiving. When they are put into the correct category for coverage (SSI Related Medicaid), they are sometimes dropped from one health plan and put into another without their knowledge. The end result is a current Medicaid beneficiary who is denied or faces delayed access to long-term care services he or she should be receiving under SSI Related Medicaid, as well as potentially losing access to providers and being forced to reapply altogether.
In addition to the lack of access to needed long-term care services, people may also experience challenges related to accessing medical service providers. In some states, the integration of the ACA and managed care has vastly changed provider infrastructure, with managed care plans for SSI Related Medicaid offering different provider networks and services than ACA Adult Medicaid managed care plans.
Many individuals, especially those new to SSI Related Medicaid, will not be aware that they are in a different category until another action is taken, such applying for a Medicaid waiver service, attempting to contact their managed care plan or going to see their providers. Both of these issues can result from the timing of an individual’s Medicaid application and approval.
Youth with Disabilities Facing Challenges with Transitions
Youth with disabilities can also potentially face significant unintended consequences around access to appropriate healthcare coverage. Children with disabilities are found eligible for SSI due to a reduction in both Activities of Daily Living and Instrumental Activities of Daily Living. This means a youth can be eligible for SSI under a broader context of criteria, like an inability to socialize or play with others.
Adult disability determinations, by contrast, are made based on a disabling condition that impacts employment—not only current employment, any employment in the country that may be available to someone with such impairments. These are vastly different criteria.
As a result, many children are found eligible and begin receiving childhood SSI and SSI Related Medicaid. However, when they turn 18, they are required to meet the adult disability guidelines in order to remain eligible. Many children fail to meet those adult requirements and their benefits are terminated. Of those that are found ineligible when they turn 18, a number are later found to be eligible in further review or appeal processes. Because Medicaid waiver programs are available only to individuals who are current Medicaid recipients, a child may have waited years to be eligible for Medicaid waivers, be found eligible, only later to be denied eligibility for adult disability—which results in losing benefits under SSI Related Medicaid and SSI eligibility. If, upon later application, the individual is once again found eligible for both adult SSI and SSI Related Medicaid, he or she must now go to the back of the waiting list for the same waiver services previously lost under a youth determination. This can result in years without necessary, critical services and care.
Experiences in the States
Health & Disability Advocates conducted a short, informal survey of seven 209(b) states that have expanded Medicaid to learn more about how states identify people who are in the “wrong” eligibility category and the processes states have in place to prevent this from happening. With six of the seven states responding to the survey, HDA found that:
• Three of six respondents offer Medicaid provider packages that are different depending on whether you are in SSI Related Medicaid or ACA Related Medicaid.
• Three of the six responding states offer some variety of waivers to individuals even if they are placed in ACA Related Medicaid.
• None of the responding states have a formal process for coordinating information about individuals who transition eligibility from one service package to another.
• Four of six states are unaware of whether individuals have been improperly placed in the wrong Medicaid eligibility package; the remaining 33% have implemented trainings, but know that individuals continue to get placed into the wrong eligibility group.
• Five states (all but North Dakota) were not aware of specific alerts that notify the Medicaid beneficiary that their eligibility for one program has ended and another started.
Upon further contact, roughly half of the states were in the early stages of identifying the issue of individuals being inappropriately placed and noted a need to develop a process for re-engaging the beneficiary to get them connected to appropriate providers for maximized health.
Recommendations Going Forward
While states are currently uncertain about the scope and breadth of these issues, it is important to identify individuals who have fallen through the cracks and may experience a significant disruption in services and eligibility. At a minimum, requiring states to create an automated notification system for changes to eligibility would provide beneficiaries greater clarity and time to plan. In North Dakota, for example, individuals receive a notice as they leave eligibility under one Medicaid group and become eligible for another. Notice of and clear information about the ramifications of the change is critical.
Another recommendation for states is to look at integration of its systems and data tracking of disability populations. Data exchanges between the state and federal systems, along with the differing eligibility criteria among various programs, should make tracking persons with disabilities a high priority for states. Minnesota, for example, is developing a new integrated system with the capacity to match data sets to a broader context of information, such as employment status. This will greatly enhance the ability of the state to make sure that people with serious health needs receive the proper services and have access to the supports they need for the greatest possible independence.
Joe Entwisle, MS, CLCP
Sr. Policy Analyst
Health & Disability Advocates